health services and delivery...

HEALTH SERVICES AND DELIVERY RESEARCHVOLUME 6 ISSUE 28 AUGUST 2018

ISSN 2050-4349

DOI 10.3310/hsdr06280

Supporting shared decision-making for older people with multiple health and social care needs: a realist synthesis

Frances Bunn, Claire Goodman, Bridget Russell, Patricia Wilson, Jill Manthorpe, Greta Rait, Isabel Hodkinson and Marie-Anne Durand

Supporting shared decision-making forolder people with multiple health andsocial care needs: a realist synthesis

Frances Bunn,1* Claire Goodman,1 Bridget Russell,1

Patricia Wilson,2 Jill Manthorpe,3 Greta Rait,4

Isabel Hodkinson5 and Marie-Anne Durand6

1Centre for Research in Primary and Community Care, University of Hertfordshire,Hatfield, UK

2Centre for Health Service Studies, University of Kent, Canterbury, UK3Social Care Workforce Research Unit, King’s College London, London, UK4Research Department of Primary Care and Population Health, University CollegeLondon Medical School (Royal Free Campus), London, UK

5Tower Hamlets Clinical Commissioning Group, The Tredegar Practice, London, UK6The Preference Laboratory, The Dartmouth Institute for Health Policy & ClinicalPractice, Lebanon, NH, USA

*Corresponding author

Declared competing interests of authors: Greta Rait is a member of the Health Technology Assessment(HTA) Commissioning Board and HTA Mental Health Panel and Methods Group. Claire Goodman is aNational Institute for Health Research (NIHR) senior investigator and a trustee of The Orders of St JohnCare Trust. Marie-Anne Durand reports personal fees from EBSCO Health and the ACCESS CommunityHealth Network outside the submitted work. There are no other financial relationships with anyorganisations that might have an interest in the submitted work in the previous 3 years.

Published August 2018DOI: 10.3310/hsdr06280

This report should be referenced as follows:

Bunn F, Goodman C, Russell B, Wilson P, Manthorpe J, Rait G, et al. Supporting shared

decision-making for older people with multiple health and social care needs: a realist synthesis.

Health Serv Deliv Res 2018;6(28).

Health Services and Delivery Research

ISSN 2050-4349 (Print)

ISSN 2050-4357 (Online)

This journal is a member of and subscribes to the principles of the Committee on Publication Ethics (COPE) (www.publicationethics.org/).

Editorial contact: [email protected]

The full HS&DR archive is freely available to view online at www.journalslibrary.nihr.ac.uk/hsdr. Print-on-demand copies can be purchased fromthe report pages of the NIHR Journals Library website: www.journalslibrary.nihr.ac.uk

Criteria for inclusion in the Health Services and Delivery Research journalReports are published in Health Services and Delivery Research (HS&DR) if (1) they have resulted from work for the HS&DR programmeor programmes which preceded the HS&DR programme, and (2) they are of a sufficiently high scientific quality as assessed by thereviewers and editors.

HS&DR programmeThe Health Services and Delivery Research (HS&DR) programme, part of the National Institute for Health Research (NIHR), was established tofund a broad range of research. It combines the strengths and contributions of two previous NIHR research programmes: the Health ServicesResearch (HSR) programme and the Service Delivery and Organisation (SDO) programme, which were merged in January 2012.

The HS&DR programme aims to produce rigorous and relevant evidence on the quality, access and organisation of health services includingcosts and outcomes, as well as research on implementation. The programme will enhance the strategic focus on research that matters to theNHS and is keen to support ambitious evaluative research to improve health services.

For more information about the HS&DR programme please visit the website: http://www.nets.nihr.ac.uk/programmes/hsdr

This reportThe research reported in this issue of the journal was funded by the HS&DR programme or one of its preceding programmes as projectnumber 15/77/25. The contractual start date was in July 2016. The final report began editorial review in August 2017 and was accepted forpublication in January 2018. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing uptheir work. The HS&DR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank thereviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arisingfrom material published in this report.

This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressedby authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HS&DRprogramme or the Department of Health and Social Care. If there are verbatim quotations included in this publication the views and opinionsexpressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR,NETSCC, the HS&DR programme or the Department of Health and Social Care.

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Bunn et al. under the terms of a commissioningcontract issued by the Secretary of State for Health and Social Care. This issue may be freely reproduced for the purposes ofprivate research and study and extracts (or indeed, the full report) may be included in professional journals provided thatsuitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications forcommercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation,Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.

Published by the NIHR Journals Library (www.journalslibrary.nihr.ac.uk), produced by Prepress Projects Ltd, Perth, Scotland(www.prepress-projects.co.uk).

NIHR Journals Library Editor-in-Chief

Professor Tom Walley Director, NIHR Evaluation, Trials and Studies and Director of the EME Programme, UK

NIHR Journals Library Editors

Professor Ken Stein Chair of HTA and EME Editorial Board and Professor of Public Health, University of Exeter Medical School, UK

Professor Andrée Le May Chair of NIHR Journals Library Editorial Group (HS&DR, PGfAR, PHR journals)

Dr Martin Ashton-Key Consultant in Public Health Medicine/Consultant Advisor, NETSCC, UK

Professor Matthias Beck Professor of Management, Cork University Business School, Department of Management and Marketing, University College Cork, Ireland

Dr Tessa Crilly Director, Crystal Blue Consulting Ltd, UK

Dr Eugenia Cronin Senior Scientific Advisor, Wessex Institute, UK

Dr Peter Davidson Director of the NIHR Dissemination Centre, University of Southampton, UK

Ms Tara Lamont Scientific Advisor, NETSCC, UK

Dr Catriona McDaid Senior Research Fellow, York Trials Unit, Department of Health Sciences, University of York, UK

Professor William McGuire Professor of Child Health, Hull York Medical School, University of York, UK

Professor Geoffrey Meads Professor of Wellbeing Research, University of Winchester, UK

Professor John Norrie Chair in Medical Statistics, University of Edinburgh, UK

Professor John Powell Consultant Clinical Adviser, National Institute for Health and Care Excellence (NICE), UK

Professor James Raftery Professor of Health Technology Assessment, Wessex Institute, Faculty of Medicine, University of Southampton, UK

Dr Rob Riemsma Reviews Manager, Kleijnen Systematic Reviews Ltd, UK

Professor Helen Roberts Professor of Child Health Research, UCL Great Ormond Street Institute of Child Health, UK

Professor Jonathan Ross Professor of Sexual Health and HIV, University Hospital Birmingham, UK

Professor Helen Snooks Professor of Health Services Research, Institute of Life Science, College of Medicine, Swansea University, UK

Professor Jim Thornton Professor of Obstetrics and Gynaecology, Faculty of Medicine and Health Sciences, University of Nottingham, UK

Professor Martin Underwood Director, Warwick Clinical Trials Unit, Warwick Medical School,University of Warwick, UK

Please visit the website for a list of editors: www.journalslibrary.nihr.ac.uk/about/editors

Editorial contact: [email protected]

NIHR Journals Library www.journalslibrary.nihr.ac.uk

Abstract

Supporting shared decision-making for older people withmultiple health and social care needs: a realist synthesis

Frances Bunn,1* Claire Goodman,1 Bridget Russell,1

Patricia Wilson,2 Jill Manthorpe,3 Greta Rait,4 Isabel Hodkinson5

and Marie-Anne Durand6

1Centre for Research in Primary and Community Care, University of Hertfordshire, Hatfield, UK2Centre for Health Service Studies, University of Kent, Canterbury, UK3Social Care Workforce Research Unit, King’s College London, London, UK4Research Department of Primary Care and Population Health, University College London MedicalSchool (Royal Free Campus), London, UK

5Tower Hamlets Clinical Commissioning Group, The Tredegar Practice, London, UK6The Preference Laboratory, The Dartmouth Institute for Health Policy & Clinical Practice,Lebanon, NH, USA

*Corresponding author [email protected]

Background: Health-care systems are increasingly moving towards more integrated approaches. Shareddecision-making (SDM) is central to these models but may be complicated by the need to negotiate andcommunicate decisions between multiple providers, as well as patients and their family carers; this isparticularly the case for older people with complex needs.

Objectives: To provide a context-relevant understanding of how models to facilitate SDM might workfor older people with multiple health and care needs and how they might be applied to integratedcare models.

Design: Realist synthesis following Realist and Meta-narrative Evidence Syntheses: Evolving Standards(RAMESES) publication standards.

Participants: Twenty-four stakeholders took part in interviews.

Data sources: Electronic databases including MEDLINE (via PubMed), The Cochrane Library, Scopus,Google and Google Scholar (Google Inc., Mountain View, CA, USA). Lateral searches were also carriedout. All types of evidence were included.

Review methods: Iterative stakeholder-driven, three-stage approach, involving (1) scoping of theliterature and stakeholder interviews (n = 13) to develop initial programme theory/ies, (2) systematicsearches for evidence to test and develop the theories and (3) validation of programme theory/ies withstakeholders (n = 11).

Results: We included 88 papers, of which 29 focused on older people or people with complex needs.We identified four theories (context–mechanism–outcome configurations) that together provide an accountof what needs to be in place for SDM to work for older people with complex needs: understanding andassessing patient and carer values and capacity to access and use care; organising systems to support andprioritise SDM; supporting and preparing patients and family carers to engage in SDM; and a person-centredculture of which SDM is a part. Programmes likely to be successful in promoting SDM are those that create

DOI: 10.3310/hsdr06280 HEALTH SERVICES AND DELIVERY RESEARCH 2018 VOL. 6 NO. 28

© Queen’s Printer and Controller of HMSO 2018. This work was produced by Bunn et al. under the terms of a commissioning contract issued by the Secretary of State for Healthand Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professionaljournals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction shouldbe addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton SciencePark, Southampton SO16 7NS, UK.

v

trust between those involved, allow service users to feel that they are respected and understood, andengender confidence to engage in SDM.

Limitations: There is a lack of evidence on interventions to promote SDM in older people with complexneeds or on interprofessional approaches to SDM.

Conclusions: Models of SDM for older people with complex health and care needs should be conceptualisedas a series of conversations that patients, and their family carers, may have with a variety of different healthand care professionals. To embed SDM in practice requires a shift from a biomedical focus to a more person-centred ethos. Service providers are likely to need support, both in terms of the way services are organisedand delivered and in terms of their own continuing professional development. Older people with complexneeds may need support to engage in SDM. How this support is best provided needs further exploration,although face-to-face interactions and ongoing patient–professional relationships are key.

Future work: There is a need for further work to establish how organisational structures can be betteraligned to meet the requirements of older people with complex needs. This includes a need to define andevaluate the contribution that different members of health and care teams can make to SDM for olderpeople with complex health and care needs.

Study registration: This study is registered as PROSPERO CRD42016039013.

Funding: The National Institute for Health Research Health Services and Delivery Research programme.

ABSTRACT


vi

Contents

List of tables ix

List of figures xi

List of boxes xiii

List of supplementary material xv

List of abbreviations xvii

Plain English summary xix

Scientific summary xxi

Chapter 1 Background 1Introduction 1Shared decision-making 1Integrated care 1

The vanguard sites 2Shared decision-making in an integrated care setting 3Shared decision-making for older people with complex health and care needs 3

Aim and objectives 4

Chapter 2 Methods 5Methodological approach 6Focus of the review 7Changes in the review process 8Phase 1: defining scope and developing programme theories 8

Scoping the literature 9Scoping interviews 9Initial programme theory 10

Phase 2: retrieval, review and synthesis 11Selection criteria 11Identification of studies 12Screening and data extraction 13Synthesis 14

Phase 3: testing and refining programme theory/ies (validation) 15Patient and public involvement 15

Chapter 3 Results 17Description of included evidence 17Context–mechanism–outcome configurations 18Context–mechanism–outcome 1: reflecting patient and carer values 30

Understanding the needs and priorities of service users 30Developing relationships 32Interprofessional working 32Patient/service user outcomes 33Context–mechanism–outcome 1: summary 33



vii

Context–mechanism–outcome 2: systems to support shared decision-making 34Organisation support 34Systems to support shared decision-making 35Managing risk and uncertainty 35Training 35Context–mechanism–outcome 2: summary 36

Context–mechanism–outcome 3: preparing patients, carers and health and social careprofessionals for the shared decision-making encounter 36

Decision aids 36Coaching 38Family-centred approaches 39Permission/space to discuss options 39Understanding that there is a choice 39Context–mechanism–outcome 3: summary 40

Context–mechanism–outcome 4: shared decision-making as part of a wider culture change 40Time and resources 40Patient activation or engagement 41Outcomes 41Context–mechanism–outcome 4: summary 42

Chapter summary 42

Chapter 4 Discussion 43Summary of findings 43Key features of programmes 43

Context 43Mechanisms 44

Implications of the findings 45Shared decision-making for older people with complex health and care needs 45Enabling older people to participate in shared decision-making 46Shared decision-making and the new models of care 46Shared decision-making and the reduction of unnecessary health services 47Changing the culture 47

Strengths and limitations 48Conclusions 49Implications for practice 50

Systems and culture 50Education and training 50Preparation for shared decision-making 51

Suggestions for future research 51

Acknowledgements 53

References 55

Appendix 1 Details of search strategy 71

Appendix 2 Details of studies and reviews on the use of patient decision aids 77

Appendix 3 Schedules for stakeholder interviews phase 1 81

Appendix 4 Interview schedule for phase 3 83

CONTENTS


viii

List of tables

TABLE 1 Definitions of key concepts used in the review and how they aredefined and operationalised 7

TABLE 2 Changes in the review process 8

TABLE 3 Details of stakeholders recruited for interviews 9

TABLE 4 Preliminary programme theory in the form of ‘if–then’ statements 10

TABLE 5 Search terms used in PubMed 12

TABLE 6 Development of ‘if–then’ statement 1 into a preliminary CMO 14

TABLE 7 Overview of included participants and study focus 18

TABLE 8 Details of studies that included older people or people with LTCsor multimorbidity 19

TABLE 9 Summary of details of included systematic reviews 21

TABLE 10 Table of included studies (primary studies and reports) 24

TABLE 11 Overview of programme theory 28

TABLE 12 Examples of supporting evidence from stakeholder interviews 28

TABLE 13 Summary of the four CMO configurations that inform theprogramme theory 44

TABLE 14 PubMed search for systematic reviews: phase 1 search terms SDM(searched July 2016; no date restrictions) 71

TABLE 15 PubMed minimally disruptive medicine: phase 1 search terms reducingtreatment burden (searched August 2016; no date restrictions) 72



ix

List of figures

FIGURE 1 The development of SDM 2

FIGURE 2 Overview of study design 5

FIGURE 3 Flow chart summarising study identification 17

FIGURE 4 Summary of CMO 1: reflecting patient and carer values 31

FIGURE 5 Summary of CMO 2: systems to support SDM 34

FIGURE 6 Summary of CMO 3: preparing for the SDM encounter 37

FIGURE 7 Summary of CMO 4: SDM as part of a wider cultural change 41

FIGURE 8 Summary of contextual factors at individual, team and system levels 44



xi

List of boxes

BOX 1 The different types of vanguards 3

BOX 2 Definition of realist terms and how they have been applied in the review 6



xiii

List of supplementary material

Report Supplementary Material 1 Evidence table CMO 1




Supplementary material can be found on the NIHR Journals Library report project page(www.journalslibrary.nihr.ac.uk/programmes/hsdr/157725/#/documentation).

Supplementary material has been provided by the authors to support the report and any filesprovided at submission will have been seen by peer reviewers, but not extensively reviewed. Anysupplementary material provided at a later stage in the process may not have been peer reviewed.



xv

http://www.journalslibrary.nihr.ac.uk/programmes/hsdr/157725/#/documentation

List of abbreviations

CMO context–mechanism–outcome

GP general practitioner

HCA health-care assistant

HCP health-care professional

HSCP health and social care professional

ICP integrated care pilot

LTC long-term condition

MAGIC Making Good Decisions InCollaboration

MCP multispeciality community provider

MDT multidisciplinary team

PACS Primary and Acute Care Systems

PAG Project Advisory Group

PCC person-centred care

PCP personalised care planning

PDA patient decision aid

PDF Portable Document Format

PIRG Public Involvement inResearch Group

PPI public and patient involvement

RAMESES Realist and Meta-narrative EvidenceSyntheses: Evolving Standards

RCT randomised controlled trial

SDM shared decision-making

STP Sustainability andTransformation Plan



xvii

Plain English summary

In this study we reviewed the evidence to find out how to improve the way we involve older people withmultiple conditions, and their family carers, in decisions about their health and social care. We call this

approach ‘shared decision-making’ (SDM). In particular, we wanted to find out how SDM can work incommunity settings where many different health and social care workers (such as general practitioners,nurses and social carers) may be involved in caring for the older person.

Engaging with stakeholders, such as professionals, patients and carers, we developed an initial ‘theory’about how interventions to support SDM for older people should work. This was then tested anddeveloped through a structured search for evidence. We then went back to the stakeholders to test thefindings of the review and refine them further.

The findings indicate that, for older people with multiple conditions, SDM should not just be thoughtof as one conversation between a patient and a doctor. Rather, it should be thought of in terms of aseries of conversations that patients, and their family carers, may have with a variety of health and careprofessionals. Some of the things we know are important for older people are face-to-face consultations,ongoing relationships with trusted professionals and time and space to consider the available options.These help older people to talk about what is important to them and give them the confidence to beinvolved in decision-making. SDM works best when all the professionals involved understand SDM andthink that it is important.

We need more research to tell us how we can best support older people who find engaging in SDMdifficult and increased consideration of how workers other than doctors can be involved in SDM.



xix

Scientific summary

Background

Shared decision-making (SDM) involves patients and health and social care professionals (HSCPs) jointlyselecting treatment, care and support packages to reflect and accommodate patients’ preferences,priorities and goals. SDM is seen as a central organising principle of integrated care. SDM may beparticularly difficult in integrated care sites where decision-making and communication need to benegotiated between, and communicated to, multiple HSCPs, as well as patients and their family carers.Moreover, for those most reliant on health and social care support, such as people who are very frail andthose with severe disabilities arising from long-term conditions, decision-making may be particularlycomplex involving matters such as resource availability, polypharmacy, consent, concordance, the capacityof patients to attend to health-care demands, support networks, safeguarding and the appropriateness oftreatment in people with multimorbidity.

Aims

The overall aim of this synthesis was to provide a context-relevant understanding of how models tofacilitate SDM might work for older people with multiple health and care needs, and how they might beapplied to integrated care models.

Methods

The synthesis drew on the principles of realist inquiry to explain how, in what contexts and for whom,interventions that aim to strengthen SDM between older patients, carers and practitioners are effective.We used an iterative, stakeholder-driven, three-phase approach.

Phase 1: development of initial programme theory/iesThe purpose of phase 1 was to develop candidate theories about why programmes that seek to promoteSDM do, or do not, work. This involved scoping the SDM literature (39 reviews and 35 primary studies)and interviews with 13 stakeholders. Stakeholders included user/patient representatives, commissionersand service providers in vanguard sites and health-care professionals (HCPs). The purposes of thestakeholder consultation were to explore key assumptions about what needs to be in place for effectiveSDM and identify relevant outcomes. The initial programme theory was discussed at a workshop attendedby research team members and at the first Project Advisory Group (PAG) meeting.

Phase 2: retrieval, review and synthesisIn phase 2 we undertook systematic electronic and lateral searches of the evidence to test and develop thetheories identified in phase 1. There were 11 separate searches, which were focused on areas relevant tothe theory identified in phase 1 [e.g. person-centred care (PCC) and coaching]. The following data sourceswere searched: MEDLINE (via PubMed), SCOPUS, The Cochrane Library (including the Cochrane Databaseof Systematic Reviews), Database of Abstracts of Reviews of Effects (DARE), Health Technology Assessment(HTA) database, NHS Economic Evaluation Database (NHS EED), Google and Google Scholar (Google Inc.,Mountain View, CA, USA). Data were extracted into a specially developed Microsoft Access® (MicrosoftCorporation, Redmond, WA, USA) database. The database was used to identify prominent recurrentpatterns of contexts and outcomes in the data and the possible means (mechanisms) by which theyoccurred.



xxi

Phase 3: testing and refining of programme theoryIn phase 3 we tested the programme theory in interviews with 11 stakeholders and through discussionswith the research team and PAG.

The review was supported by two well-established public involvement groups based at the University ofHertfordshire and King’s College London. Members of these groups were involved in the PAG, tookpart in stakeholder interviews and attended project team workshops. As such, they contributed to thedevelopment of our programme theory.

Results

We included 88 items, which included 26 evidence reviews, 46 primary research studies, seven guidelines,case studies or reports and nine discussion or opinion papers. Twenty-nine items focused on older peopleor participants with complex health and care needs (e.g. multimorbidity). The literature focused eitherspecifically on SDM or on aspects of care, such as PCC or personalised care planning (PCP), in which SDMhas an essential if not specified role to play with the patient or their proxy.

Despite the constraints of the current evidence base we were able to develop an explanatory account ofwhat SDM should look like for older people with complex health and care needs. Our theory draws onfour context–mechanism–outcome (CMO) configurations that together provide an account of what needsto be in place for SDM to work for older people with complex needs. These highlight the importance ofunderstanding patient and carer values, the organisation of systems to support SDM, the need to supportand prepare patients and family carers to engage in SDM and the need for wider cultural changes of whichSDM is a part. The CMOs are grounded in evidence from the literature and stakeholder perspectives.

Context–mechanism–outcome 1: reflecting patient and carer valuesThe evidence shows how systems that enable health and care professionals to develop relationships withpatients/service users and their family carers trigger feelings of trust, engagement and respect that canlead to improved outcomes, such as patient and carer satisfaction with services and decisions. The qualityof individual clinicians’ communication skills, and their ability to foster trusting relationships with olderpeople and their families, is fundamental to SDM. In addition, there is also a need for systems that fostercontinuity of care both through ongoing relationships with one clinician (relationship continuity) andthrough system-based approaches that develop ways of working whereby the patient is linked to multipleprofessionals (management and informational continuity). SDM with older people with complex needs islikely to increase appointment length; although this is thought to improve adherence to treatmentregimens, there is currently little evidence to suggest a link to health outcomes or service use.

Context–mechanism–outcome 2: systems to support shared decision-makingThere is evidence that organisational support, appropriate training and system-based aspects, such aslonger appointments, lead to HCPs feeling more supported and having the confidence to engage withSDM. It can also lead to increased patient satisfaction with decision-making because patients feel thatservice providers are attentive to them and their concerns. There is a lack of studies addressinginterprofessional approaches to SDM or the training needs of providers other than doctors.

Context–mechanism–outcome 3: preparing for the shared decision-making encounterOlder people with complex health needs are likely to need support to participate in SDM. Although theevidence suggested that interventions, such as decision aids and coaching, can improve involvement inSDM, the impact on adherence or health outcomes is not proven. Moreover, most tools were not designed(and have not been tested) for the oldest older person. Evidence suggests that if tools are used they needto be brief, designed for use within a consultation and focused on facilitating discussion between thepatient, family carer and professionals involved in their care. The right culture, which allows people time to

SCIENTIFIC SUMMARY


xxii

ask questions and to discuss options, and staff with positive attitudes towards SDM are likely to be moreimportant than tools for older people with complex health and care needs.

Context–mechanism–outcome 4: shared decision-making as part of a wider culture changeShared decision-making is likely to be most effective when it involves service providers who have the rightskills, attitudes and tools, working in systems that are structured to support service providers and usersto engage in SDM. Key to this is a culture that involves person- (and family-) centred approaches. ThisCMO incorporates components from the previous CMOs, such as organisational resources (time andspace), systems to support SDM and skills development through continuous practice development. Thesewider changes are important to trigger mechanisms, such as familiarity and confidence. This familiarity,which develops over time, is necessary for both HCPs and patients and their families and includes anunderstanding that patients and (when appropriate) their family carers have responsibility for their healthand the decisions that affect them. The evidence suggests that such approaches may lead to improvedservice user and provider satisfaction with services and with the quality of decisions, but there is currentlylittle research on the impact on health-related outcomes.

Conclusions

Programmes that are likely to be successful in creating shared understanding and SDM between service usersand providers are those that create trust between those involved, allow service users to feel that they arerespected and understood and engender confidence to engage in SDM. We suggest that confidence is likelyto take time to develop as it is related to the development of a shared understanding and expectation ofSDM between service users and service providers. The cultural shift that is needed to embed SDM in practicemay require new ways of working for HCPs and a shift away from a biomedical focus to a more person-centred ethos that goes beyond the individual patient encounter. To achieve this, HCPs are likely to needsupport, both in terms of the way services are organised and delivered and in terms of their own continuingprofessional development. This cultural shift also involves an expectation that patients and their family carerswill take a greater responsibility for their health and the decisions that affect them, and they too may needsupport to engage in SDM. How this support might best be provided needs to be further explored, althoughface-to-face interactions and ongoing patient–professional relationships are clearly key. In terms of support,it is important that well-meaning attempts to focus on patient goals do not increase health inequalities.

Models of SDM for older people with complex health and care needs should move away from thinkingabout SDM purely in terms of one encounter between a doctor and a patient. Rather, SDM should beconceptualised as a series of conversations that patients, and their family carers, may have with a varietyof different health and care professionals. Such an approach relies on continuity of care fostered throughgood relationships between service providers and users, and systems that facilitate the communication ofinformation, including about patient goals and preferences, between different health and care professionals.

The literature on SDM involving older people or those with complex needs is largely qualitative ordescriptive; there are very few evaluations of interventions specifically designed to promote SDM with thisgroup and with their family carers. This review suggests that there is need for further work to establishhow organisational structures can be better aligned to the requirements of older people with complexneeds. This includes defining and evaluating the contribution that different members of the health andcare team can make to SDM for older people with complex health and care needs.



xxiii

Implications for practice

The following implications for practice have emerged from the review.

Systems and culture

l The evidence suggests that SDM is likely to become embedded only if it is regarded as an essentialcomponent of ‘good’ health care and is linked to a culture of person-centred approaches throughoutan organisation.

l The evidence suggests that a culture that allows people time to ask questions and to discuss options,and staff with positive attitudes towards SDM, are likely to be more important than decision supporttools for older people with complex health and care needs.

l The evidence suggests that there is a need for visible organisational support in order for SDM tobecome embedded. This includes visibility in internal policy documents, financial and organisationalsupport (e.g. enabling longer appointments when necessary, providing appropriate administrativesupport) and the inclusion of SDM in continuing professional development.

l The evidence suggests that systems that foster continuity of care both through ongoing relationshipswith one clinician (relationship continuity) and through system-based approaches that develop ways ofworking whereby the patient is linked to multiple professionals (management and informationalcontinuity) are important for SDM.

l It appears likely that in instances in which choices are constrained by resource limitations, health-carepolicies or evidence-based recommendations, it is still valuable to explore a patient’s choices and reasons.

l Although properly conducted SDM may increase the length of consultations (such as those in primarycare), there is evidence to suggest that this may be ameliorated by involving other members of themultidisciplinary team (MDT) in the SDM process.

l The evidence suggests that it is important that service providers and service users have shared expectationsof, and familiarity with, SDM for it to become properly embedded. This is likely to take time to develop.

Education and training

l Our findings suggest that SDM education and training should be focused on all members of the MDTand not just on doctors or lead clinicians. It should be part of undergraduate training programmes butalso part of ongoing professional development.

l Evidence points to a need for SDM and communication skills training to include the task of exploringwhat matters to patients and how to elicit their goals and priorities.

l The evidence suggests that shared decision-making training should include information on riskcommunication.

Preparation for shared decision-making

l Evidence suggests that many older people with complex health and care needs, particularly those withlower health literacy or conditions, such as depression, are likely to need support to take part inconsultations involving SDM.

l The evidence indicates that patient decision aids (PDAs) for older people with complex needs are likelyto be most effective when used as part of a face-to-face interaction with a HCP, for example forfacilitating discussion between the patient, family carer and professional.

SCIENTIFIC SUMMARY


xxiv

Suggestions for future research

Several potential areas for future research were identified by the review. These are listed in order of priority:

l How can interventions be tailored to the SDM needs of older people with complex health and careneeds and how effective are such approaches? For example, would longer consultations in primary carefacilitate SDM and improve patient outcomes?

l How can family members be involved in SDM and what is the impact of this? For example, what is theimpact of making it the default option (with consent from the older person) to involve designatedfamily members in consultations and discussions about treatment options? What models work best,what would be the uptake and how would it impact on satisfaction and patient outcomes?

l What service models are most likely to support SDM? For example, does moving away from disease-related checks in primary care to a more holistic and team-based regular review increase SDM andimprove patient outcomes?

l How can health and care professionals other than doctors be involved in SDM?l What is the impact of training members of the MDT to act as decision coaches for older people with

complex health and care needs? Who should act as a coach and at what stage should coachingbe provided?

l What is happening in SDM conversations involving older people and how are PDAs being used and towhat effect? Can modes of communication, other than face to face, be effective?

l Can decision aids be developed for use with older people with multiple health and care needs? Forexample, rather than focusing on individual conditions can SDM be used to look more generally at theoverall treatment burden for older people and their family members?

l How can patient decisions, goals and preferences be best recorded and communicated betweendifferent team members in integrated care sites?

l What would be the impact of overt discussions about prognosis? Would knowing more about anindividual’s views about coming to the end of their life shape decisions?

l How does working in a more patient-centred way, with a focus on SDM, impact on health-careproviders’ experience and satisfaction?

Study registration

This study is registered as PROSPERO CRD42016039013.

Funding

Funding for this study was provided by the Health Services and Delivery Research programme of theNational Institute for Health Research.



xxv

Chapter 1 Background

Introduction

Including the patient perspective is a central organising principle of integrated care.1 Moreover, there isincreasing recognition of the importance of strengthening relationships between patients, carers andpractitioners,2,3 particularly for individuals most reliant on health and care services, such as people who arevery old and those with long-term conditions (LTCs).4,5 However, evaluations of the English integrated carepilots (ICPs) reported that patients were less satisfied with their involvement in decision-making about theircare than prior to the instigation of the ICPs.6 There is a need to establish the mechanisms that preserveand foster shared decision-making (SDM) between providers, patients and carers and ascertain how theyachieve improvements in patient outcomes.7,8

Shared decision-making

Shared decision-making involves patients and health and social care professionals (HSCPs) jointly selectingtreatment, care and support packages to reflect, respect and accommodate the patient’s preferences,priorities and goals.9,10 The phrase ‘sharing the decision’ was coined by Robert Veatch11 in an article exploringthe ethics of patient–doctor interactions. The subject has gathered pace over the years and now includesthe development, evaluation and implementation of patient decision aids (PDAs).12 Stiggelbout et al.13 showhow differing philosophies, such as medical ethics and health services research, have contributed to thedevelopment of SDM.13 The progression of these ideas is mapped out in Figure 1.

Towle and Godolphin19 identified eight essential elements of SDM:

1. develop a partnership with the patient2. establish/review the patient’s preference for information, for example amount and format3. establish/review the patient’s preferred role in decision-making4. ascertain/respond to patients’ ideas, concerns and expectations5. identify choices and evaluate the research evidence relating to the individual6. present evidence and help the patient reflect on and assess the impact of alternative decisions7. make/negotiate a decision in partnership and manage conflict8. agree on an action plan and arrangements for follow-up.

Although the original underlying ethos for sharing decisions between patients and HSCPs is based onvalues, that is, people have the right to self-determination and autonomy, there is evidence that SDM canlead to better outcomes and care for people.20 For example, patients who feel involved in the decisionand in accord with the HSCP are less likely to need other services such as extra tests or referrals to otherHSCPs.21 More recently, SDM has been envisaged as being part of person- and family-centred care andintegrated care,22–29 and linked with approaches such as care planning and the Year of Care.30–33

Integrated care

For older people with complex health needs, which may arise as a result of dementia, frailty and multimorbidity,navigating health and social care can be difficult.34 There is a high risk that they will experience poor continuityand fragmentation of care.35,36 Approaches are needed that aim to address the complexity of life when livingwith, and managing, multiple LTCs (e.g. for older people with diabetes mellitus)37,38 or that recognise the needto consider the ability of patients and their families to attend to the demands of each condition.39–41 Such



1

approaches require the building of relationships, meaningful discussion and SDM between a range of differentproviders, patients and carers.42 In addition, integrated care is seen as a way of reducing the costs of health andsocial care services1,43 by preventing duplication of services and reducing demand for acute hospital services.44,45

Integrated care has been proposed as one solution to the fragmentation of care, and has been adoptedin the UK46–49 and internationally.45–50 Newer models of care have focused on whole-systems approachesto care delivery, particularly for those with LTCs and complex needs.25–28,33,51,52 In England this includesinitiatives such as the Year of Care,25 the House of Care26,27 and the vanguard sites of the Five YearForward View.8 In other parts of the UK, initiatives to increase integration (particularly of health and socialcare) have been in place for some time.46 For example, in Scotland, integration authorities are nowresponsible for funding that was previously managed by NHS boards and local authorities.49

The vanguard sitesIn England, the Five Year Forward View8 set out new models of integrated care as part of a wider systemchange in the NHS; these reinforce the aim for ‘a more engaged relationship with patients, carers andcitizens’ in order to promote well-being and prevent ill health.8 Fifty vanguard sites are piloting integrated carewith the aim of achieving personalised, well co-ordinated care for patients and addressing traditional divides

Veatch11 uses the phrase‘sharing of decision-making’

Underlying ethos: freedom,dignity, patient autonomy, justice

1980s increasing emphasison patient autonomy

(e.g. Emanuel and Emanuel14)

Clinical practice variation linked to SDM – recognition of role that physician preferences have in decision-making

(Wennberg et al.15)

Underlying ethos:health servicesresearch, EBM

Increasing body of work onthe use of patient decision

aids

Charles et al.16 introduce the idea of a two-way exchange of

information and treatmentpreferences

Growing emphasis onpatient-centred care sharing

power and responsibility(Mead and Bower18)

SDM model furtherdeveloped

(e.g. Elwyn et al.17)

FIGURE 1 The development of SDM. EBM, evidence-based medicine.

BACKGROUND


2

between primary care, community services and hospitals.8,53 Their remit is to find new ways to delivercare in line with the five models of care (Box 1) identified in the Five Year Forward View.8 The models areunderpinned by preparatory and exploratory work carried out in collaboration with National Voices.54

Integrated Primary and Acute Care Systems (PACS) and multispeciality community provider (MCP) vanguardscurrently cover about 8% of England but are similar to the Sustainability and Transformation Plans (STPs) nowbeing introduced across England.55 STPs seek to implement the NHS Five Year Forward View by creating newaccountable models of care provision. Some are using a MCP model; larger STPs are using the PACS model.56

The MCP model involves creating integrated community-based multidisciplinary teams (MDTs), which aresupported by other specialist disciplines and by care co-ordinators who help patients and families withmultiple LTCs to access services in other health and social care settings.56

Shared decision-making in an integrated care settingIntegrated care sites, such as vanguard sites, offer a particular challenge for SDM as decision-making hasto be negotiated between, and communicated to, multiple HSCPs, as well as patients and their families.Decision-making becomes more complex for people with increasing frailty as the capacity to self-manage isaffected by the cumulative effects of LTCs. The nature of decisions is complicated by resource availability,polypharmacy, decline in decision-making abilities and concordance, availability of support networks,suitability of treatment, safeguarding and the increased likelihood of depression.39,57–59 The skills for sharingand discussing personal information with vulnerable patients and their families can be hard to embedin services.

Shared decision-making for older people with complex health and care needsOlder people with complex health and social care needs often rely on family members to negotiate accessto care or to advocate for them.5,60,61 Person-centred approaches and models, like the triangle of care,32

recognise the crucial role of families for quality and safety and encourage their routine involvementin decision-making, with agreement from the patient.2,4 If the decision-making ability of an older personis significantly compromised, family members are able to act as proxies62,63 if they have legal power ofattorney for health and welfare decisions, and they should also be consulted if not. Recently, discussionabout continuity of care favours a coconstruction approach, with patients, families and professionals asactive partners.58,64,65 Although service providers recognise the contribution of family carers, this recognitiondoes not always translate into their routine engagement in decision-making with or for older people withmultiple, often interlinked, health conditions.58

To develop an understanding of the realities of working in and across complex overlapping systems of care, itis necessary to synthesise evidence from diverse strands of research.66,67 Similarly, the evidence demonstratingthe effectiveness of interventions designed to promote SDM is drawn from a wide variety of research andpractice.68,69 Realist methodology allows the deconstruction of component theories underpinning differentinterventions and enables us to consider relevant contextual data to test our understanding of the applicabilityof different approaches for older people with multimorbidity. It also helps us to examine how SDM might

BOX 1 The different types of vanguards

l Primary and acute care systems, which join up general practice, community, mental health and

hospital services.l Multispeciality community providers, which move services out of hospitals and into the community.l Enhanced care in care homes, which improves services for older people, joining up their health, social care

and rehabilitation.l Urgent and emergency care, which creates new approaches to improve service co-ordination and reduce

emergency hospital admissions.l Acute care collaborations, which link hospitals to improve their clinical and financial viability.



3

achieve desired outcomes such as improvements in patient safety, clinical effectiveness, quality of life andpatient experience7 within the context of integration, austerity measures, growing demand for health andsocial care and personalisation of care.

Aim and objectives

The overall aims of the synthesis were to:

l identify key features or mechanisms of programmes and approaches that strengthen relationshipsbetween community HSCPs, patients with multiple health and care needs and their family carers

l provide a context-relevant understanding of how models to facilitate SDM might work for older peoplewith multiple health and care needs, and how they might be used to facilitate person-centred care(PCC) in collaborative models of health and social care.

The objectives were to:

l identify how interventions, or elements of interventions, to promote SDM with older people withmultiple long-term health and social care needs, and their family carers, are thought to work, on whatoutcomes and for whom they work (or why they do not work)

l explore how models to facilitate SDM with older people with multiple health and social care needsmight be incorporated into service delivery in collaborative models of care in order to achieve outcomesthat reflect PCC

l explore how different contexts support or inhibit participants’ responses to activities that support SDMin collaborative care models

l inform the development of process and outcome measures to assess the impact of SDM and PCC inthe vanguard sites

l identify key areas for future research, including promising interventions that merit further evaluation.

BACKGROUND


4

Chapter 2 Methods

This chapter includes text from the protocol, which was published by Bunn et al.70 This is an OpenAccess article distributed in accordance with the Creative Commons Attribution Non Commercial

(CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properlycited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0.

We used an iterative three-stage approach that drew on the knowledge and networks of the researchteam and incorporated the views of stakeholders. Stakeholders are important in realist work because theyarticulate how different programmes are thought to operate and what needs to be present for change tooccur. The realist synthesis focus is thus driven by ‘negotiation between stakeholders and reviewers’.71

The review follows the Realist and Meta-narrative Evidence Syntheses: Evolving Standards (RAMESES)publication standards for realist synthesis,72 and is registered on the PROSPERO database (registrationnumber CRD42016039013).72,73 An overview of the study design is provided in Figure 2.

Phase 1: define scope anddevelop theories

Phase 2: retrieval, review andsynthesis to test and further

develop theories

Phase 3: test and refineprogramme theories

(validation)

Consultationwith

stakeholders(e.g. serviceproviders,

service-userrepresentatives)

Mapliterature

(systematicreviews)

Workshop 1:review findings and

agree explanatory model andtheories to guide

phase 2

Systematicsearches to

identifyevidence

Synthesisedata andidentifycontext–

mechanism–outcomes

Workshop 2:review findings and resultant

hypotheses

Furtherconsultation

withstakeholders

Final report

FIGURE 2 Overview of study design.



5

http://creativecommons.org/licenses/by-nc/4.0

Methodological approach

Realist synthesis is a systematic, iterative, theory-driven approach designed to make sense of diverseevidence about complex interventions applied in different settings.72,74,75 Realist review assumes that thereis more to reality than how we see it. There is an external reality or world that can be observed andmeasured, but how this reality is articulated and responded to is constantly being shaped by individuals’perceptions and reasoning and/or dominant social and cultural mores. It is this interaction that createsparticular responses, which in turn lead to observed outcomes.76 The rationale for using a realist synthesisapproach for this review was that interventions to promote SDM in older people with complex health andcare needs are likely to be multicomponent and contingent on the behaviours and choices of thosedelivering and receiving the care.

A realist synthesis assumes a ‘generative’ approach to causation, that is, ‘to infer a causal outcome (O)between two events (X and Y), one needs to understand the underlying mechanism (M) that connectsthem and the context (C) in which the relationship occurs’.77 It is typically used to understand complexinterventions that ‘often have multiple components (which interact in non-linear ways) and outcomes(some intended and some not) and long pathways to the desired outcome(s)’.72 Central to the realistreview process is the development of programme theory, that is, what a programme or interventioncomprises and how it is expected to work, which can then be tested and refined by reviewing the relevantevidence.72 Key realist terms are defined in Box 2.

BOX 2 Definition of realist terms and how they have been applied in the review

Context (C)

The ‘backdrop’ conditions (which may change over time), for example, the way systems are configured and to

what extent they support SDM. Context can be broadly understood as any condition that triggers and/or

modifies the behaviour of a mechanism.78

Mechanism (M)

The generative force triggered in particular contexts that leads to outcomes. Often denotes the reasoning

(cognitive or emotional) of the various ‘actors’, that is, older people with complex health and care needs,

relatives and health-care professionals (HCPs). Mechanisms are linked to, but are not the same as, a service’s

strategies or interventions. Identifying the mechanisms goes beyond describing what happened to theorising

why it happened, for whom and under what circumstances.79–81

Outcomes (O)

A result of the interaction between a mechanism and the triggering context. These may include improved

satisfaction with decisions or better adherence to treatment.72

Programme theory

Those ideas about what needs to be changed or improved in order to facilitate SDM with older people with

complex health and care needs, what needs to be in place to achieve improvement(s) and how programmes

are believed to work. It specifies what is being investigated and the elements and scope of the review. Theories

rather than ‘programmes’ are the basic unit of analysis.82

METHODS


6

Focus of the review

The synthesis focused on community-dwelling older people (aged ≥ 65 years) with complex health andcare needs, for example people with frailty, multimorbidity, LTCs or dementia and those who require helpwith personal care. The rationale for focusing on this group was that these people often have experienceof using many health and social care services, their needs change over time and/or suddenly (sometimeswith progressive loss of cognitive and/or physical function), a family carer is frequently involved in theircare and they are often at risk of exacerbation of their illness57 and death. In addition, many find it difficultto navigate complicated and under-resourced services and are particularly vulnerable to fragmentedcare.35 Ideas around SDM were explored in Chapter 1. There are, however, other concepts (or mid-rangetheories) that emerged as important during the review process, for instance, ideas around person-centredapproaches to care. In Table 1 we provide our working definition of SDM and other concepts that we feelare relevant to this review.

TABLE 1 Definitions of key concepts used in the review and how they are defined and operationalised

Concept How it is defined and operationalised in the review

SDM l Depends on:

. . . a good conversation in which clinicians share information about the benefits, harms, andburden of alternative diagnostic and therapeutic options and patients explain what mattersto them and their views on the choices they face. It should follow the principles of patientcentred care, promote informed choice, and result in care that patients’ value

Reproduced with permission from Agoritsas et al.83

l In the process, patients’ autonomy is respected, patients are helped to establish their valuesand preferences, and final treatment decisions are reflected through agreement betweenpatients and their practitioner(s) rather than through a unilateral decision84

Patient-centred care l Health care that establishes a partnership among practitioners, patients and their families toensure that providers and systems deliver care that is attentive to the needs, values andpreferences of patients. This requires mutual, power-sharing relationships that arecollaborative and include the ‘whole person’ orientation85

l It includes the biopsychosocial perspective; the ‘patient-as-person’ – understanding thepersonal meaning of the illness for each individual patient; sharing power and responsibility;the therapeutic alliance; and the ‘doctor-as-person’ – awareness of the influence of thepersonal qualities and emotion of the doctor on the doctor–patient relationship18

Person-centredapproaches

A person-centred approach puts people, families and communities at the heart of health, careand wellbeing. It means people feeling able to speak about what is important to them and theworkforce listening and developing an understanding of what matters to people. It meansworking in a system in which people and staff feel in control, valued, motivated andsupported

Reproduced with permission from Skills for Care, Skills for Health29

l SDM is a core activity of person-centred approaches29

l It is underpinned by values of respect for persons (personhood), individual right to self-determination, mutual respect and understanding. It is enabled by cultures of empowerment thatfoster continuous approaches to practice development86

Interprofessionalworking

l A process in health care by which professionals from different disciplines collaborate toprovide an integrated and cohesive approach to patient care87

l An interprofessional approach to SDM could therefore consist of an interprofessional teamidentifying the best options and facilitating the patient’s involvement in decision-makingusing those options88

continued



7

Changes in the review process

As recommended in the RAMESES publication standards, changes in the review process are documented inTable 2.

Phase 1: defining scope and developing programme theories

In phase 1 we scoped the literature and consulted with stakeholders in order to develop candidate theoriesabout why programmes that seek to promote SDM do, or do not, work. These two processes wereconducted in parallel and were considered as independent ‘theory’-gleaning activities.

TABLE 2 Changes in the review process

Protocol Revisions/changes

We said that we would consult with up to 20representatives in phase 1

We conducted 13 stakeholder interviews in phase 1. As recruitmentwas proving difficult, the advisory group recommended that wefocus on the literature review and complete stakeholderconsultation once our programme theory was more established.We recruited fewer representatives from vanguard sites and fromadvocacy groups than hoped

We said that stakeholder interviews in phase 1would initially be carried out by e-mail, followed bytelephone or face-to-face interviews with a smallersample of up to 10 participants purposively selectedto reflect the original stakeholder groups

Several people were invited to respond by e-mail but no one did.Eight interviews (with 11 participants) were conducted face to faceor by telephone

In the protocol we said that we would developvignettes to use in stakeholder interviews

There was insufficient time to develop vignettes. Instead, theprogramme theory was used as a basis for the interviews in phase 3

TABLE 1 Definitions of key concepts used in the review and how they are defined and operationalised (continued )

Concept How it is defined and operationalised in the review

Relationalco-ordination

l In Gittell and Suchmann’s89 theory, relational co-ordination is conceptualised as the way thatwork is co-ordinated through a network of relationships among participants in a work process.The theory identifies three key attributes of relationships needed to support co-ordinationand performance:

1. shared goals that go beyond participants’ specific role-related goals2. shared knowledge that enables participants to see how their specific tasks contribute to

the whole process3. mutual respect that enables individuals to overcome status barriers that might hinder them

from seeing and taking account of the work of others

Continuity of care l How contact, co-ordination of care, information and SDM are achieved and sustained overtime between patients and practitioners. Continuity of care is particularly important for thosewith complex health needs

l Continuity has moved to a partnership paradigm in which continuity of care is recognised tobe constructed by patients, families and professionals, all of whom have a part to play in itsaccomplishment64,65

Patient engagement l Patients, families, their representatives and health professionals working in active partnership atvarious levels across the health-care system – direct care, organisational design and governance,and policy-making – to improve health and health care. Decision-making responsibility is shared90

Patient activation l Having the knowledge, skill and confidence to manage one’s health and health care91

Evidence suggests it is a significant predictor of health behaviours92

METHODS


8

Scoping the literatureThe scoping review of the literature sought to identify existing theories on how and why the involvement ofpatients and carers is thought to be important, how the existing theories are defined in the literature, howinterventions on SDM are meant to work and on which outcomes and how SDM might work in professionalsettings. The starting point was systematic reviews of SDM and related topics (such as PCC). To identify relevantreviews we searched PubMed and The Cochrane Library using the following Medical Subject Heading (MeSH)terms: shared decision-making, patient participation, patient decision-making, decision support, decision aid,expert patient, proxy decision-making, collaborative care, co-construction, coproduction and minimally disruptivemedicine. These terms were combined with methodological search terms for systematic reviews. In addition, weundertook keyword searches on Google Scholar (Google Inc., Mountain View, CA, USA) for both reviews andprimary studies and looked for relevant papers published by key authors in the area, such as Elwyn and Légaré.Full details of the search strategy are provided in Appendix 1.

We identified 39 relevant reviews20,40,66–69,93–124 and 35 primary studies or discussion papers.17,40,67,83,93–102,125–145

Information extracted from the reviews included study aims, types of participants, definition of SDM,outcomes measured, relevance to our target group and any theoretical assumptions made. The reviewsallowed us to understand the range and approach of research on SDM but provided limited detail withwhich to develop our programme theory. Time limitations meant that we were unable to carry out detaileddata extraction on all 35 primary studies in phase 1, but they were used to generate ideas about possiblecontexts and mechanisms.

Scoping interviewsWe conducted face-to-face or telephone scoping interviews with 13 stakeholders (Table 3). In phase 1 thepurpose of the consultation with stakeholders was to explore key assumptions about what needs to be in placefor effective SDM within integrated care initiatives, identify relevant outcomes and clarify the focus and scopeof the searches in phase 2. Interview participants were purposively sampled to include a range of programmestakeholders.81 They were recruited as a result of the networks of the research team. Participants were given acopy of the study information sheet – this provided contact details for the research team and a consent form –

which they were asked to read and sign. Ethics approval was obtained from the University of HertfordshireHealth and Human Sciences Ethics Committee with delegated authority (reference number CSK/SF/UH/02387).Interviews were guided by a topic guide, which was used to explore understanding and experiences of SDM,including what works well and what could be improved. Interview transcripts were read by one author (BR)and discussed with a second (FB). Data from the interviews were regularly reviewed (BR and FB) and the topicguide was adapted as our programme theory developed.146 Interviews were audio-recorded and transcribed.

TABLE 3 Details of stakeholders recruited for interviews

Type of stakeholder

Phase (n)

1 2

Commissioners and managers from organisations initiating integrated care(e.g. vanguard sites)

2

Providers of health and social care in community settings involved ininitiatives to involve patients and their family carers in their care

3 (2 GPs and 1geriatrician)

4

Older people and family carers who have experience of multiple practitionersand services – recruited from the University of Hertfordshire Patient andPublic Involvement in Research Group and the Social Care WorkforceResearch Unit’s User and Carer Group, which includes a diverse group ofolder people who are frail, and carers, from diverse backgrounds

7 (3 older peopleand 4 family carers

4 (1 older personand 3 family carers)

Advocacy and user/carer groups such as Age UK London, Carers UK,National Voices, Healthwatch and Greater London Forum for Older People

1 3

Total 13 11

GP, general practitioner.



9

Initial programme theoryFrom the literature and from stakeholder transcripts, a series of seven explanatory accounts were built upthat contained ‘if–then’ statements, which helped to specify context and mechanism. These ‘if–then’statements were illustrated with supporting evidence from the interviews and literature. ‘If–then’ statementsidentify an intervention/activity linked to outcome(s) and contain references to contexts and mechanisms(although these may not be very explicit at this stage) and/or barriers and enablers (which can be bothmechanism and context).147 The ‘if–then’ statements provided a useful way of structuring our thinking. Theyalso helped to focus the process of taking ideas and assumptions about how interventions work and testingthem against the evidence that we found.

To refine the theory, the seven ‘if–then’ statements were discussed at a half-day workshop that wasattended by eight members of the research team. To ensure transparency of approach and an audit trail,we transcribed recordings of group discussions and maintained structured field notes on suggestions anddecision-making processes. Following this meeting the statements were revised and then presented to theProject Advisory Group (PAG) for further discussion. The PAG included experts in the field of older people’shealth, primary care, patient involvement and realist methods. It also included members of the Universityof Hertfordshire Public Involvement in Research Group (PIRG) (experts by experience). The PAG suggestedthat some of the statements were too complex and needed to be disaggregated. It also introduced theconcept of ‘fake versus real’ SDM, to indicate when SDM appeared to be conducted as a tick box exerciserather than as a real process for decision-making. As a result, the seven ‘if–then’ statements were reducedto five (Table 4).

TABLE 4 Preliminary programme theory in the form of ‘if–then’ statements

Title If Then Outcome

Reflectingpatient and carervalues

If HCPs place less emphasis on ‘fixingpeople’ and more on patients’ goals andemotional, cultural and cognitive needs

Patients and their familycarers will feel valued andlistened to

Patients and their familycarers will feel that theywere involved in thedecision and are satisfiedwith the outcome

Preparing(patients andcarers) for theSDM encounter

If older people with complex health andsocial care needs are supported toparticipate in SDM (e.g. through educationand information, the use of advocates orcoaches, more focus on patient goals andvalues, good relationships with HCPs andappropriate decision aids that takeaccount of multimorbidity)

Then patients and theirfamily carers will feelempowered and willunderstand and value SDM

Patients and their familycarers will be willing andable to participate in SDM

Sharing thecommunicationof a decision

If HCPs are familiar with each other’sexpertise, roles and responsibilities, andsystems facilitate communication betweenindividuals (including different HCPs andpatients and carers)

Then professionals willwork better together andare less likely to undermineeach other

Once a decision has beenmade by the patient anda HCP it will be sharedacross the MDT/agencies

Fake vs. realSDM

If systems are organised to support andprioritise SDM (e.g. support from clinicalleaders, regular measurement of patientoutcomes, clear protocols around dealingwith risk and uncertainty, appropriateinformation technology and longerappointments)

Then SDM is not just seenas a ‘tick box’ exercise byHSCPs

Real not fake SDM

Reducing theworkload (forpatients andcarers)

If HCPs are able to use appropriate SDMtechniques to regularly discuss the clinicalvalue and effectiveness of proposedtreatments or interventions

This will lead to areduction in inappropriateclinical activity

Improved function orability to enjoy life

HCP, health-care professional.

METHODS


10

Phase 2: retrieval, review and synthesis

Selection criteriaIn phase 2 we undertook systematic searches of the evidence to test and develop the theories identified inphase 1. The main inclusion criteria were as follows:

l Community-dwelling older people with complex health and care needs, such as those with frailty,multimorbidity and/or dementia. The focus was on those aged ≥ 65 years, although for certain groups(e.g. minority ethnic groups and homeless people) younger participants (aged ≥ 55 years) could beincluded if the issues were similar.

l Older people with complex health needs living in their own homes, in sheltered housing or in extracare housing (where people are very likely to still have the decision-making capacity to participatein SDM).

l Studies of any intervention or strategy designed to promote the ongoing engagement of older peoplewith complex health needs, and/or their family carers, in decision-making relating to their health orsocial care needs [e.g. decision aids, physician or patient coaching, education or training, personalisedcare planning (PCP) or joint goal-setting]. The focus was on complex decision-making and personalgoals rather than studies focused on single issues (such as whether or not to have a hip replacement).

l Studies of interprofessional SDM in which at least two health-care professionals (HCPs) collaborated toachieve SDM with the patient and/or family carer either concurrently or sequentially.144

l Studies that provided evidence relating to the implementation and uptake of interventions designed topromote SDM for older people with complex health needs.

Types of studiesThe purpose of the searches was not to identify an exhaustive set of studies but rather to be able to reachconceptual saturation in which sufficient evidence was identified to meet the aims of the review.148 Adiversity of evidence provides an opportunity for richer data mining and theory development. Therefore, weincluded studies of any design including randomised controlled trials (RCTs), controlled studies, uncontrolledstudies, interrupted time series studies, cost-effectiveness studies, process evaluations, surveys and qualitativestudies of participants’ views and experiences of interventions. We also included grey literature, policydocuments and information about locally implemented programmes in the UK. As is usual with a realistreview, the process of identifying relevant information and deciding what to include was iterative, involvingtracking backwards and forwards between the literature and our review questions.149 As such, theidentification of relevant literature carried on throughout the course of the review and some studies initiallythought to be relevant were later excluded.

OutcomesA main aim of the NHS Five Year Forward View8 is to tackle the gap between care and quality. Quality isseen in terms of patient safety, clinical effectiveness and patient experience. This definition of quality wasused to guide the outcomes for this review, with a particular focus on the patient experience. However,part of the review process involved an iterative identification of outcomes that are important tostakeholders, that address patient and family involvement in care planning and decision-making and thathave been reported in the literature. Potential outcomes included the following:

l patient experience – participation in decision-making, improved match between chosen option andpatient preferences, impact on the decision-making experience, quality of life and perceived burdenof treatment

l patient safety – access to appropriate care, prevention of adverse events such as falls, avoidableemergency admissions and substantiated abuse and/or neglect

l clinical effectiveness – health-related outcomes (e.g. prevention of exacerbations of LTCs) and serviceuse [e.g. unnecessary hospital admissions, unnecessary general practitioner (GP) visits].



11

Identification of studiesWe used a range of search techniques to identify relevant English-language publications:

l electronic databases such as PubMed, Scopus and The Cochrane Library [including Cochrane CentralRegister of Controlled Trials (CENTRAL), Cochrane Database of Systematic Reviews (CDSR), Database ofAbstracts of Reviews of Effects (DARE) and Health Technology Assessment (HTA) database]

l checking of reference lists from primary studies and systematic reviewsl citation searches using the ‘cited by’ option in Scopus and Google Scholar and the ‘related articles’

option in PubMed (‘lateral searching’).

The searches were designed to reflect the five theory areas identified in phase 1 (see Table 4). For example,preparing for the SDM encounter (‘if–then’ statement 2) included searches around coaching, educationand training and SDM for hard-to-engage groups. The latter (SDM for hard-to-engage groups) was built inbecause clinical members of the team (supported by stakeholder interviews) highlighted the difficulty thatmany people may have in engaging in SDM (e.g. those with chronic conditions and depression). Searcheswere conducted in December 2016. Two searches, interprofessional and reducing the workload, had datelimits applied to the searches because literature in the area is relatively recent. Date limits and search termsused in PubMed are provided in Table 5. For full details of the searches see Appendix 1.

TABLE 5 Search terms used in PubMed

Theory area Search terms

1. Reflecting patient andcarer values

No date limits:

((“shared decision making”) OR (“decision aid”) OR (“decision making”)) AND (((“goalsetting”) OR (“person centred care”) OR (“person centered care”) OR (“personalised”) OR(“patient goals”) OR (“patient values”) OR (“patient preferences”) OR (personalised[Title]OR personalized[Title] OR (patient centred) AND Title OR (patient centered) AND Title OR(patient preference*) AND Title OR goals[Title] OR (goal setting) AND Title OR personalised[Title])) AND (old*[Title] OR aged[Title] OR elder*[Title] OR geriatric[Title] OR frail[Title] ORcomplex[Title] OR complex[Title] OR carer[Title] OR dementia[Title] OR alzheimer*[Title]))

2. Preparing for the SDMencounter

Coaching/advocacy (no date limits):

(((“coaching”) OR (“advocacy”) OR (“advocate”) OR (advocate[Title/Abstract] OR advocacy[Title/Abstract] OR coach*[Title/Abstract]) OR (“coach”)) AND ((“shared decision making”)OR ((shared decision making) AND Title/Abstract OR SDM[Title/Abstract] OR decision[Title/Abstract]))) AND ((“frail elderly”) OR (“older person”) OR (“dementia”) OR (“elderly”) OR(old*[Title] OR elderly[Title] OR frail[Title] OR dementia[Title] OR alzheimer*[Title] OR aged[Title]))

Education/training (no date limits):

((“shared decision making”) AND (education[Title] OR educate[Title] OR training[Title] ORguidance[Title] OR support[Title] OR information[Title] OR guide[Title] OR train[Title])) AND(old[Title] OR older[Title] OR elder*[Title] OR frail[Title] OR complex[Title] OR carer[Title] ORgeriatric[Title] OR aged[Title] OR dementia[Title] OR alzheimer[Title])

((“shared decision making”) AND (education[Title] OR educate[Title] OR training[Title] ORguidance[Title] OR support[Title] OR information[Title] OR guide[Title] OR train[Title])) AND(“primary care”)

SDM for hard-to-engage groups (e.g. those with depression) (filters: published in the last5 years):

‘Shared decision making’ OR ‘decision aid’ (both MeSH) OR (coproduction[Title/Abstract]OR co-productive[Title/Abstract] OR partnership[Title/Abstract] OR co-production[Title/Abstract] OR co-production[Title/Abstract]) AND ‘depression’ OR ‘mental health’ OR‘mental illness’ (MesH) AND systematic review

METHODS


12

Screening and data extractionElectronic search results were downloaded into bibliographic software and, when identified, duplicates weredeleted. Documents from other sources were manually recorded in the same file. Two reviewers independentlyscreened titles and abstracts for relevance. Full manuscripts of all potentially relevant citations were obtainedand downloaded into Mendeley reference management and PDF (Portable Document Format) organisationsoftware (Elsevier, Amsterdam, The Netherlands); all members of the research team had shared access to thesemanuscripts. Two reviewers screened full manuscripts for inclusion based on the relevance and rigour of theevidence, with disagreements resolved by discussion with a third team member.

Decisions on inclusion made at different points in time were recorded in a Microsoft Excel® (Windows® 10)spreadsheet (Microsoft Corporation, Redmond, WA, USA). Consistent with a realist synthesis approach,items were assessed for inclusion on the basis of whether or not they were considered ‘good enoughand relevant enough’.150,151 This was an iterative process that involved discussion between team members.‘Good enough’ was based on the quality of evidence, for example was it of a sufficient standard for thetype of research and were the claims made considered to be trustworthy. ‘Relevance’ related to whether

TABLE 5 Search terms used in PubMed (continued )

Theory area Search terms

Shared decision making’ OR ‘decision aid’ (both MeSH) OR (coproduction[Title/Abstract]OR co-productive[Title/Abstract] OR partnership[Title/Abstract] OR co-production[Title/Abstract] OR co-production[Title/Abstract]) AND ‘depression’ OR ‘mental health’ OR‘mental illness’ (MesH) AND ((“frail elderly”) OR (“older person”) OR (“dementia”) OR(“elderly”) OR (old*[Title] OR elderly[Title] OR frail[Title] OR dementia[Title] OR alzheimer*[Title] OR aged[Title]))

3. Sharing thecommunication of a decision

Interprofessional (limited to last 10 years):

(((“interprofessionalism”) OR (“interprofessional”) OR (“interdisciplinary”) OR(“multidisciplinary”) OR (“coordinated”) OR (“cross discipline”) OR (“inter disciplinary”)OR (“integrated”)) AND ((“shared decision making”) OR (“decision aid”) OR (“decisionmaking”))) AND (old*[Title] OR aged[Title] OR elder*[Title] OR geriatric[Title] OR frail[Title]OR complex[Title] OR complex[Title] OR carer[Title] OR dementia[Title] OR alzheimer*[Title])

“relational coordination” OR “relational coproduction” AND (old*[Title] OR aged[Title] ORelder*[Title] OR geriatric[Title] OR frail[Title] OR complex[Title] OR complex[Title] OR carer[Title] OR dementia[Title] OR alzheimer*[Title]) No date limits

Relational competence (no date limits):

Relational competence AND (promote[Title/Abstract] OR promotion[Title/Abstract] ORtrain*[Title/Abstract] OR increase[Title/Abstract] OR intervention[Title/Abstract] ORprogramme[Title/Abstract]) AND general OR community OR primary

4. Fake vs. real SDM Draws on searches run for other theory areas (no date limits):

Incentive (ti/ab) OR incentives (ti/ab) OR incentivisation [TI/AB] OR incentivization [TI/AB]

AND “shared decision making” (MeSH)

5. Reducing the workload(for patients and carers)

Limited to last 5 years:

(((“minimally disruptive medicine”) OR (“caregiver burden”) OR (“carer burden”) OR(“patient burden”) OR (“treatment burden”) OR (“quality of life”) OR (appropriate[Title]OR inappropriate[Title])) AND (“shared decision making”)) AND (old[Title/Abstract] ORolder[Title/Abstract] OR aged[Title/Abstract] OR elderly[Title/Abstract] OR frail[Title/Abstract]OR carer[Title/Abstract] OR complex[Title/Abstract] OR geriatric[Title/Abstract] OR dementia[Title/Abstract] OR Alzheimer[Title/Abstract])

Reproduced with permission from Bunn et al.208 This is an Open Access article distributed in accordance with the terms ofthe Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon thiswork, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/.



13

http://creativecommons.org/licenses/by/4.0/

or not the authors provided sufficient descriptive detail and/or theoretical discussion to contribute to thetheories generated in phase 1. Poorly executed studies (low rigour) could still be included if the study wasconsidered to contribute to understanding about how a programme was thought to work (high relevance).

A bespoke data extraction form was developed, piloted on five records and further refined as necessary.Once the final fields for data extraction were agreed, an electronic version was created in MicrosoftAccess® (Microsoft Corporation, Redmond, WA, USA). The data extraction form included fields relating tostudy aims, design and methods; the types of participants (e.g. older people, people with LTCs, HSCPs);outcomes; information relevant to the theory areas; and emerging context–mechanism–outcome (CMO)configurations. Data were extracted by one reviewer, with 20% of the manuscripts checked by a secondreviewer. PDFs in Mendeley were also annotated and relevant sections highlighted. Data in a realist senseare not just restricted to the study results or outcomes measured but also include author explanations anddiscussions, which can provide a rich source of ‘data’ that make explicit how an intervention was thoughtto work or not.

SynthesisThe Access database was used to identify prominent recurrent patterns of contexts and outcomes(demi-regularities) in the data and the possible means (mechanisms) by which they occurred.152 Thisprocess enabled iteration from plausible explanations to the uncovering of potential CMO configurations.An example of the development of one of the original ‘if–then’ statements into a preliminary CMO isgiven in Table 6. In total, this CMO went through six iterations before the final programme theory wasdeveloped. Although all of the theories were developed and refined as the review progressed, some, suchas that presented in Table 6, remained similar to the original theory developed in phase 1. In contrast,statement 5 (reducing the workload) was not taken forward as a CMO. This was largely because it wasnot supported by the emerging evidence but also because it was felt to be too conceptually differentfrom SDM.

Data synthesis involved individual reflection and team discussion and was designed to (1) question theintegrity of each theory, (2) adjudicate between competing theories, (3) consider the same theory indifferent settings and (4) compare the stated theory with practice experiences. Data from the studies orother evidence were then used to confirm, refute or refine the candidate theories. When theories failed toexplain the data, alternative theories were sought.

Once the preliminary mapping of the evidence into tables was complete, the research team held a secondworkshop. This was attended by six members of the Research Management Group and one public andpatient involvement (PPI) representative. This workshop was structured to include in-depth discussion ofthe findings and to develop and confirm the resultant hypotheses. As at the first workshop, we transcribed

TABLE 6 Development of ‘if–then’ statement 1 into a preliminary CMO

Original ‘if–then’ statement 1 (reflecting patient andcarer values)

‘If–then’ statement revised to a CMO (first draft ofCMO)

If HCPs place less emphasis on ‘fixing people’ and more onpatients’ goals and their emotional, cultural and cognitiveneeds

If HCPs are able to develop relationships with patients thatallow them to understand their emotional, cultural andcognitive needs, and identify (and regularly assess) patientand carer goals (e.g. through continuity, appropriatecommunication skills, ability to factor in impact of previousexperiences, less focus on biomedical targets) (context)

Then patients and their family carers will feel valued andlistened to; they will feel that they were involved in thedecision and will be satisfied with the outcome

Patients and their carers will feel valued and listened to,interested and involved in the decision and have trust inprofessionals (mechanism)

Leading to satisfaction with the decision (outcome)

METHODS


14

recordings of group discussions and took notes. This provided evidence of the reasoning processes andjustification of inferential shifts.74 Following the workshop the CMOs were revised (by FB, BR and CG) andcirculated to all members of the research team for comments.

Phase 3: testing and refining programme theory/ies (validation)

To enhance the reliability of the resultant hypotheses and develop a final review narrative we tested thehypotheses and supporting evidence with interviews with a further 11 stakeholders. An interview schedulewas developed based on the four CMOs and aimed to elicit stakeholders’ views on their meaningfulness,from both practice and service user/carer perspectives (see Appendix 3). The transcripts were read by oneauthor (BR) and discussed with a second (FB). The interview data were used to test the CMOs. The finalCMOs and the supporting evidence are presented in the next chapter.

Patient and public involvement

A well-established PIRG at the University of Hertfordshire trains and provides support to public membersand has a broad membership of service users and carers. Two members of this group (Paul Millac andMarion Cowe) commented on the proposal and one (Paul Millac) was a co-applicant on the application.The review was also supported by the Social Care Workforce Research Unit User and Carer Group. Twomembers of this group (Jeanne Carlin and Jane Hopkins) were part of the PAG. Paul Millac attended ourfirst project team workshop and Jane Hopkins attended the second. Our PPI members were thereforeinvolved in shaping and refining our programme theory. As part of the realist review process, we alsorecruited additional service user representatives for stakeholder interviews.



15

Chapter 3 Results

This chapter includes text from Bunn et al.208 This is an Open Access article distributed in accordancewith the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to

distribute, remix, adapt and build upon this work, for commercial use, provided the original work isproperly cited. See: http://creativecommons.org/licenses/by/4.0/.

Description of included evidence

In phase 2 we included 88 items. These comprised 26 evidence reviews,20,66–69,93,94,103–121 46 primary researchstudies (48 papers),63,84,144,153–195,209 seven guidelines, cases studies or reports25,31,196–200 and nine discussion/opinionpapers.17,83,201–207 Of the 46 primary research papers 25 were qualitative studies, five were RCTs and the restincluded a variety of study designs. Of the evidence reviews, 20 were systematic reviews,20,66–69,93,94,103,104,106–110,112,114,116–118,121 five were literature reviews105,111,115,119,120 and one was a realist synthesis.113 The study selection processcan be seen in Figure 3. Thirty-three papers from phase 1 were excluded at phase 2 because they were notconsidered to be of high enough rigour or relevance.

Phase 1: scoping searches

243 records screened(and lateral searching)

39 reviews included35 primary studies

Phase 2: targeted systematicsearches

178 hard copiesscreened

Phase 2 searches:1393 titles/abstracts

screened

88 items included• 26 evidence reviews• 46 primary research papers• 7 guidelines/reports/ case studies• 9 opinion/discussion papers

13 reviews and20 primary studies

from phase 1excluded in phase 2

FIGURE 3 Flow chart summarising study identification. Reproduced with permission from Bunn et al.208 This is anOpen Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0)license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, providedthe original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/.



17



The included literature focused specifically either on SDM or on aspects of care, such as PCC or PCP, inwhich SDM plays an essential, if not specified, part with the patient or their proxy. We categorised theincluded reviews and other items on the basis of the focus of the paper. The numbers in each categorycan be seen in Table 7. Thirty-one primary studies and nine systematic reviews included HSCPs.

In total, 25 primary studies and four systematic reviews focused on older people or those with complexhealth and care needs. Of those, 19 focused on older people or had a population with a mean or medianage of > 65 years, 9 specified that people had multimorbidities and 11 specified that they had a LTC(Table 8). Of these studies the majority were qualitative, surveys or uncontrolled evaluations. In otherstudies populations were younger, were health or care professionals or the population was not specified.

Sixteen reviews were evaluating an intervention, such as decision aids or tools, coaching and interventionsto increase or promote the adoption of SDM among HCPs. Nineteen of the other items described orevaluated an intervention. Interventions included care planning, training and education for professionals,the use of decision aids or integrated/collaborative care practices that involved SDM. More details of thereviews can be seen in Table 9 and of the other items (e.g. primary studies) in Table 10.

Context–mechanism–outcome configurations

The theory development, refinement and testing process (see Chapter 2) led to the development of fourCMO configurations, which are presented in Table 11. Together, these explanations or hypothesesconstitute a programme theory about ‘what works’ (or ‘what might work’) to facilitate SDM for olderpeople with multiple health and care needs or conditions, and how they might be applied within modelsof integrated working. These CMO configurations were developed and tested in stakeholder interviewsand the SDM literature. In the following text, each CMO is discussed in more detail with supportingevidence from the literature. Supporting evidence from the stakeholder interviews can be seen in Table 12.More detail about the evidence supporting the CMOs can be seen in Report Supplementary Materials 1–4.

TABLE 7 Overview of included participants and study focus

Category

Number of

Primary studies/itemsa Systematic reviews

Professionals views on SDM 10 2

Interprofessional SDM 13 1

Use of patient decision aids/tools 13 10

Patient engagement in SDM 17 7

Influences on SDM 33 4

Education/training HCPs 13 4

Patient/carer views/preferences/goals 30 9

a Paper can be included in more than one category.

RESULTS


18

TABLE 8 Details of studies that included older people or people with LTCs or multimorbidity

Study author and date Type of research Mean or median age (years) Specific conditionOlderpeoplea Multimorbidity LTC

Duquemin 201125 Case study Age not given Diabetes mellitus ✓

Glenpark Medical Practice201631

Case study Not specified ✓ ✓

Health Foundation 2014198 Case study Not specified Living in a care home ✓

Holmside Medical Group2014200

Case study Not specified ✓

van Summeren et al. 2016192 Mixed-methods pilotstudy

Mean age 83 ✓ ✓

Fried et al. 2007169 Observational Mean 73 (SD 7) ✓ ✓

Naik et al. 201663 Observational Mean age 65 Cancer ✓

Bynum et al. 2014159 Qualitative Mean age 84 (range 80–93) Relates to a variety of decisions (e.g. surgery,medication, diagnostic procedures)

✓

Groen-van de Ven et al.2016172

Qualitative Mean age 80 (range 62–89) Dementia ✓

Hart et al. 2016174 Qualitative Median age COPD 65.5, lungcancer screening 67 (range 48–83)

COPD and lung cancer screening ✓

Kuluski et al. 2013179 Qualitative Mean age 82.3 ✓ ✓ ✓

Ladin et al. 2016180 Qualitative Mean age 76 Receiving dialysis ✓

Mercer et al. 2016181 Qualitative Mean age 57 (range 42–67) Economically deprived area ✓

Robben et al. 2012183 Qualitative Mean age 78.8 (range 65–90) Frail older people ✓

Ruggiano et al. 2016184 Qualitative Mean age 76.9 (range 60–90) ✓ ✓

Shay and Lafata 2014188 Qualitative Mean age 63 (SD 10.4)

Sheaff et al. 2017189 Qualitative Mean age 78 ✓ ✓ ✓

Wrede-Sach et al. 2013193 Qualitative 18 aged 70–80, 16 aged ≥ 80 Living independently ✓

Blom et al. 2016155 RCT Median age 80 (range 77–83) 3+ morbidities ✓ ✓ ✓

continued

DOI:10.3310/hsdr06280

HEA

LTHSERVICES

ANDDELIVERY

RESEARCH

2018VO

L.6NO.28

©Queen

’sPrinter

andController

ofHMSO

2018.This

work

was

producedby

Bunnet

al.under

theterm

sof

acom

missioning

contractissued

bythe

Secretaryof

Statefor

Health

andSocialC

are.This

issuemay

befreely

reproducedfor

thepurposes

ofprivate

researchand

studyand

extracts(or

indeed,the

fullreport)may

beincluded

inprofessional

journalsprovided

thatsuitable

acknowledgem

entismade

andthe

reproductionisnot

associatedwith

anyform

ofadvertising.

Applications

forcom

mercialreproduction

shouldbe

addressedto:

NIHRJournals

Library,NationalInstitute

forHealth

Research,Evaluation,

Trialsand

StudiesCoordinating

Centre,

Alpha

House,

University

ofSoutham

ptonScience

Park,Southam

ptonSO

167N

S,UK.

19

TABLE 8 Details of studies that included older people or people with LTCs or multimorbidity (continued )

Study author and date Type of research Mean or median age (years) Specific conditionOlderpeoplea Multimorbidity LTC

Hacking et al. 2013173 RCT Mean age: control 67.4, intervention65.2

Men with prostate cancer

Elliott et al. 2016113 Realist review Not specified Older people (engagement in decision-making)

✓

Dardas et al. 2016165 Survey Median age 70 (range 65–92) Orthopaedic clinic ✓

Cramm 2016162 Survey Mean age 69.9 (range 30–93) COPD ✓ ✓

Gleason et al. 2016170 Survey Mean age 76 (SD 8) ✓ ✓

Cramm 2014164 Survey and qualitative Mean 65.9 (range 20–93) ✓ ✓

Austin et al. 2015103 Systematic review Not specified Adults living with advanced or life-limitingdiseases (including 2 on older people and4 on dementia)

✓

Bratzke et al. 2015105 Systematic review Not specified ✓

Coulter et al. 201566 Systematic review Not specified ✓

van Weert et al. 2016121 Systematic review Not specified ✓

COPD, chronic obstructive pulmonary disease; SD, standard deviation.a Study inclusion criterion was older people or the mean or median age of participants was ≥ 65 years.

RESULTS

NIHRJournals

Librarywww.journalslibrary.nihr.ac.uk

20

TABLE 9 Summary of details of included systematic reviews

Study authorand year Focus Design/method Description of intervention Sample size Type of participants

Austin et al.2015103

Decision tools Systematic review Decision aids 17 RCTs Adults with advanced orlife-limiting diseases

Bélanger et al.2011104

Process of SDM in palliativecare

Mixed-methods systematicreview

NA 37 studies (both quantitativeand qualitative)

Palliative patients and theirfamilies

Bratzke et al.2015105

Process of priority-setting anddecision-making

Narrative literature review NA (but focused on studies ofself-management)

13 (mostly qualitative) Adults with multimorbidity

Clayman et al.2016106

Patient participation indecision-making

Systematic review Interventions to promote patientparticipation in decision-making

116 studies HCPs and a range of differentpatient groups and ages

Couët et al.2015107

Extent to which HCPs involvepatients in decision-making

Systematic review Use of the OPTION tool tofacilitate SDM

33 studies HCPs and a range of differentpatient groups, ages and clinicalcontexts

Coulter et al.201566

PCP for adults with LTCs Systematic review of RCTs Involvement of patients intreatment and managementdecisions

19 studies(10,856 participants)

Adults with LTCs

Coylewrightet al. 2014108

Decision aids Patient-level MA ofdecision aid

Each RCT compared the use of adecision aid with UC

7 RCTs Adults: diabetes mellitus, chestpain, osteoporosis or MI

Doyle et al.2013109

Links between patientexperience and clinical safety/effectiveness

Systematic review NA 55 studies (mixed) Various

Durand et al.201469

SDM interventions fordisadvantaged groups

Systematic review and MA Interventions designed toengage disadvantaged patientsin SDM

19 studies Socially disadvantaged groups

Dwamena et al.2012110

Promoting patient-centredapproaches

Systematic review with MA Interventions that promotepatient-centred care in clinicalconsultations

43 RCTs HCPs including those in training.Patients, predominantly adults,with general medical problems

Dy and Purnell2012111

Quality of SDM Literature review NA NA Unclear

Edwards et al.2009112

Information exchange and SDMin health-care consultations

Systematic review(qualitative)

NA 7 papers HCPs and a variety of patientgroups

continued

DOI:10.3310/hsdr06280

HEA

LTHSERVICES

ANDDELIVERY

RESEARCH

2018VO

L.6NO.28

©Queen

’sPrinter

andController

ofHMSO

2018.This

work

was

producedby

Bunnet

al.under

theterm

sof

acom

missioning

contractissued

bythe

Secretaryof

Statefor

Health

andSocialC

are.This

issuemay

befreely

reproducedfor

thepurposes

ofprivate

researchand

studyand

extracts(or

indeed,the

fullreport)may

beincluded

inprofessional

journalsprovided

thatsuitable

acknowledgem

entismade

andthe

reproductionisnot

associatedwith

anyform

ofadvertising.

Applications

forcom

mercialreproduction

shouldbe

addressedto:

NIHRJournals


forHealth


Trialsand

StudiesCoordinating

Centre,

Alpha

House,

University

ofSoutham

ptonScience

Park,Southam

ptonSO

167N

S,UK.

21

TABLE 9 Summary of details of included systematic reviews (continued )


Elliott et al.2016113

Engagement in health-caredecision-making

Realist synthesis Interventions to engage olderadults in health-care decision-making

213 papers Older people and theircaregivers

Elwyn et al.2013114

Patient-targeted decisionsupport interventions

Systematic review withnarrative synthesis

Brief tools for face-to-faceencounters and more extensivetools such as booklets, videos orwebsites

17 studies HCPs in primary and secondarycare

Fagerlin et al.2013115

The role of VCMs in decisionaids

Evidence review andsummary

Value clarification in decisionaids

61 studies (quantitative andqualitative)

Variety of patient groups

Joseph-Williamset al. 2014116

Patient-reported barriers/facilitators of SDM

Systematic review withthematic synthesis

NA 44 studies Variety of patient groups

Land et al.2017117

Decision-makingcommunication practicesrelevant to health-careoutcomes

Systematic review ofconversation analysis

NA 28 papers People consulting a HCP(face-to-face interactions)

Légaré et al.200893

HCP-perceived barriers andfacilitators with regards toimplementing SDM

Systematic review withcontent analysis

NA 38 papers The vast majority of participants(n= 3231) were physicians(89%)


Patients’ perceptions of theinterventions designed toincrease HCPs’ use of SDM

Systematic review ofquantitative studies

Included educational material,educational meetings, audit andfeedback, reminders anddecision aids

21 studies HCPs

RESULTS

NIHRJournals


22



Interventions to improve HCPsadoption of SDM

Systematic review and MA Interventions to improve HCPs’adoption of SDM

38 RCTs, 1 non-randomisedstudy

HCPs and patients. Mostcommon conditions were cancerand CVD

Miller et al.2014119

Explore involvement of personswith dementia and their familycarers in SDM

Literature review NA – studies decision-makingprocesses

33 papers were included inthe review

No specific details given

Shay and Lafata201568

SDM and patient outcomes Systematic review Studies that evaluatedrelationship between SDM andhealth outcome/s

39 studies Patient groups not specified

Sinnott et al.201367

GPs’ experiences of clinicalmanagement of multimorbidity

Systematic review ofqualitative studies

NA 10 studies (275 GPs) GPs

Stacey et al.2013120

Coaching/guidance in thecontext of patient decision aids

Narrative review (notdescribed as a systematicreview)

Coaching and guidance for SDM NA NA

Stacey et al.201420

Decision aids for people facingtreatment or screeningdecisions

Systematic review and MA Decision aids 115 studies All patient groups

van Weert et al.2016121

Decision aids for treatment,screening or care decisions

Systematic review of RCTsand CCTs

Decision aids vs. usual care Included 22 papers Older people or their primaryinformal carers

CCT, controlled clinical trial; COPD, chronic obstructive pulmonary disease; CVD, cardiovascular disease; MA, meta-analysis; MI, myocardial infarction; NA, not available; OPTION, ObservationPatient Involvement in Decision Making instrument; UC, usual care; VCM, values clarification method.

DOI:10.3310/hsdr06280

HEA

LTHSERVICES

ANDDELIVERY

RESEARCH

2018VO

L.6NO.28

©Queen

’sPrinter

andController

ofHMSO

2018.This

work

was

producedby

Bunnet

al.under

theterm

sof

acom

missioning

contractissued

bythe

Secretaryof

Statefor

Health

andSocialC

are.This

issuemay

befreely

reproducedfor

thepurposes

ofprivate

researchand

studyand

extracts(or

indeed,the

fullreport)may

beincluded

inprofessional

journalsprovided

thatsuitable

acknowledgem

entismade

andthe

reproductionisnot

associatedwith

anyform

ofadvertising.

Applications

forcom

mercialreproduction

shouldbe

addressedto:

NIHRJournals


forHealth


Trialsand

StudiesCoordinating

Centre,

Alpha

House,

University

ofSoutham

ptonScience

Park,Southam

ptonSO

167N

S,UK.

23

TABLE 10 Table of included studies (primary studies and reports)

Study author and yearType ofresearch

Description ofintervention Participants Setting Main focus

Agoritsas et al. 201583 Discussion Not appropriate General population Applies to all health-caresettings

PDAs

Barrett et al. 2016203 Discussion Not appropriate HCPs Community Communicating risk (regardingstatins)

Belkora et al. 2008153 Before/after Pre-consultationcoaching

People with cancer Community Identifying patient goals

Berger 2015202 Discussion Not appropriate HCPs Not appropriate SDM and uncertainty

Berntsen et al. 2015154 Review/contentanalysis

Not appropriate General population Variety Patient goals

Blom et al. 2016155 RCT Proactive careplanning

Older people Primary care Other

Bookey-Bassett et al. 2017156 Concept analysis Not appropriate Older people Community Interprofessional SDM

Bridges et al. 2015157 Qualitative Not appropriate HCPs Secondary care – clinics Influences on SDM, other

Bugge et al. 2006158 Qualitative Not appropriate General population, HCPs Community includingoutpatients

Barriers to SDM

Bynum et al. 2014159 Qualitative Not appropriate Older people Community Patient/carer views or preferences

Chong et al. 2013160 Qualitative Not appropriate HCPs Primary and secondarycare

Interprofessional SDM

Chong et al. 2013161 Qualitative Not appropriate HSCPs (multidisciplinary) Primary and secondarycare


Clayman et al. 2016205 Discussion Not appropriate Not appropriate Not appropriate Patient perspective of SDM

Col et al. 2011201 Discussion Not appropriate HCPs Primary care Interprofessional SDM

Cooper et al. 2016206 Discussion Not appropriate HCPs Acute care Goal concordance

Cramm 2012163 Before/after Chronic care model HSCPs Primary care Service delivery for people with LTCs

Cramm 2014164 Mixed methods Chronic care model Older people Primary care Service delivery for people with LTCs

Cramm 2016162 Survey Chronic care model People with COPD (mostly older) Community Service delivery for people with LTCs

RESULTS

NIHRJournals


24



Dardas et al. 2016165 Survey Not appropriate HCPs Secondary care –

orthopaedic clinicInfluences on SDM, patient/carerviews or preferences

Diabetes UK et al. 201125 Case studies ‘Year of Care’ model HCPs, people with diabetesmellitus

Primary care PCC in LTCs

Durand et al. 2015166 Documentaryanalysis

Not appropriate Not applicable Various PDAs, incentives for SDM

Eaton et al. 2015204 Discussion Not appropriate Not applicable Community PCC in LTCs

Edwards et al. 2004 RCT Training for GPs inSDM

GPs Community, primarycare

Education/training HCPs

Elwyn et al. 2004167 RCT Training for GPs inSDM

General population, HCPs (GPs) Community Education/training HCPs

Elwyn et al. 201217 Discussion Not appropriate General population, HCPs Any clinical consultation Other, relationships

Farrelly et al. 2016168 Qualitative Joint care planning People with mental healthproblems, HSCPs

Community Care planning

Foot et al. 2014196 Review forguideline

Not appropriate Not applicable Not appropriate Influences on SDM, patient/carerviews or preferences

Fried et al. 2007169 Observational Not appropriate Older people with COPD, canceror heart failure

Community Influences on SDM

Gleason et al. 2016170 Survey Not appropriate Older people withmultimorbidities

Community PDAs

Glenpark Medical Practice 201631 Care study The ‘Year of Care’initiative

HCPs, people with LTCs Inner city PCC for people with LTCs

Gorin et al. 2017207 Discussion Not appropriate Not applicable Not appropriate Clinical nudges

Grim et al. 2016171 Qualitative Not appropriate People with mental healthproblems

Community Influences on SDM

Groen-van de Ven et al. 2016172 Qualitative Not appropriate People with dementia, informaland paid carers

Community SDM for people with dementia

Hacking et al. 2013173 RCT Pre-consultationcoaching

Men with prostate cancer Community Coaching

continued

DOI:10.3310/hsdr06280

HEA

LTHSERVICES

ANDDELIVERY

RESEARCH

2018VO

L.6NO.28

©Queen

’sPrinter

andController

ofHMSO

2018.This

work

was

producedby

Bunnet

al.under

theterm

sof

acom

missioning

contractissued

bythe

Secretaryof

Statefor

Health

andSocialC

are.This

issuemay

befreely

reproducedfor

thepurposes

ofprivate

researchand

studyand

extracts(or

indeed,the

fullreport)may

beincluded

inprofessional

journalsprovided

thatsuitable

acknowledgem

entismade

andthe

reproductionisnot

associatedwith

anyform

ofadvertising.

Applications

forcom

mercialreproduction

shouldbe

addressedto:

NIHRJournals


forHealth


Trialsand

StudiesCoordinating

Centre,

Alpha

House,

University

ofSoutham

ptonScience

Park,Southam

ptonSO

167N

S,UK.

25

TABLE 10 Table of included studies (primary studies and reports) (continued )



Hart et al. 2016174 Qualitative Not appropriate Older people Outpatient clinics Use of PDA/tools

Health Foundation 2017198

(also Baqir et al. 2016)191Case study Multidisciplinary SDM HSCPs, residents and family

membersCare home Interprofessional SDM

Herlitz et al. 2016175 Qualitative Not appropriate Adolescents with diabetesmellitus

Diabetes melliuts clinic Influences on SDM

Holmside Medical Group 2014200 Case study Holistic care for peoplewith LTCs

HCPs Primary care Service organisation

Jones et al. 2011176 Questionnaires Tool for presentingrisk

HCPs, people at risk of CVD Clinics Influences on SDM

Joseph-Williams et al. 2017177 Qualitative SDM training HCPs Primary care Training for HCPs, implementationof SDM

Körner et al. 2013178 Qualitative Not appropriate HCPs (multidisciplinary) Primary and secondarycare


Kuluski et al. 2013179 Qualitative Not appropriate Older people (two or more LTC) Urban community inON, Canada

Identifying patient goals

Ladin et al. 2016180 Qualitative Not appropriate Older people Dialysis clinics Interprofessional SDM

Légaré et al. 2011a144 Qualitative Not appropriate HCPs (multidisciplinary) Community Influences on SDM, relationships

Légaré et al. 2011b209 Qualitative Not appropriate General population Community Interprofessional SDM

Lown et al. 2011199 Development ofa model

Not appropriate HCPs Community or acutesettings

Training for HCPs

Mercer 2016181 Qualitative Tool for providing PCC Adults aged > 30 years withmultimorbidity

Community PCC

Naik et al. 201663 Observational Not appropriate Cancer survivors withmultimorbidities

Unsure Patient/carer views or preferences

National Collaborating Centre forPrimary Care 2009197

Guideline Not appropriate Not applicable Not appropriate Medicines adherence

RESULTS

NIHRJournals


26



Politi and Street 2011182 Development ofa model

Not appropriate Not applicable Not appropriate Collaborative decision-making

Robben et al. 2012183 Qualitative Not appropriate Frail older people Community PDA

Ruggiano et al. 2016184 Qualitative Not appropriate Older people Community HCPs views on SDM

Sanders et al. 2016185 RCT Training in SDM GPs Primary care Training in SDM

Schaller et al. 2015186 andSchaller et al. 2016187

Before/after eHealth portal Family caregivers Memory clinic insecondary care

Patient/carer views or preferences

Schuling et al. 2012190 Qualitative Not appropriate HCPs Primary care Patient engagement

Shay and Lafata 2014188 Qualitative Not appropriate General population Community Identifying patient goals

Sheaff et al. 2017189 Qualitative Not appropriate People aged ≥ 65 years, with atleast two LTCs

Primary care Patient electronic records and PCC

Tietbohl et al. 2015194 Qualitative Decision supportintervention

HCPs Community PDA

van Summeren et al. 2016192 Questionnaire Outcome prioritisationtool

Frailty, multimorbidity Primary care Patient/carer views or preferences

Wrede-Sach et al. 2013193 Qualitative Not appropriate Older people Community Older people’s experiences of SDM

Zoffmann et al. 2008195 Qualitative Not appropriate PPl with diabetes mellitus andnurses

Community and acute Interprofessional SDM

COPD, chronic obstructive pulmonary disease; CVD, cardiovascular disease.

DOI:10.3310/hsdr06280

HEA

LTHSERVICES

ANDDELIVERY

RESEARCH

2018VO

L.6NO.28

©Queen

’sPrinter

andController

ofHMSO

2018.This

work

was

producedby

Bunnet

al.under

theterm

sof

acom

missioning

contractissued

bythe

Secretaryof

Statefor

Health

andSocialC

are.This

issuemay

befreely

reproducedfor

thepurposes

ofprivate

researchand

studyand

extracts(or

indeed,the

fullreport)may

beincluded

inprofessional

journalsprovided

thatsuitable

acknowledgem

entismade

andthe

reproductionisnot

associatedwith

anyform

ofadvertising.

Applications

forcom

mercialreproduction

shouldbe

addressedto:

NIHRJournals


forHealth


Trialsand

StudiesCoordinating

Centre,

Alpha

House,

University

ofSoutham

ptonScience

Park,Southam

ptonSO

167N

S,UK.

27

TABLE 11 Overview of programme theory

Programme theory Supporting evidence

CMO 1: systems that enable HSCPs to develop relationships withpatients and carers, and with each other, and that allow them tounderstand and assess individual needs and patient and carercapacity to access and use care, will activate trust and engagementleading to better outcomes for patients and carers

17,63,66–68,84,104,105,107,110,113,117–119,144,155–157,160,162–165,168,171,

172,174,175,177–179,181–185,188,189,192,196–200,203

See Report Supplementary Material 1

CMO 2: systems that are organised to support and prioritise SDM willlead to HSCPs feeling supported (and equipped) to engage in SDM,resulting in SDM becoming part of the culture of care

17,25,31,66,67,107,110,157,162–165,167,168,177,182,183,185,189,200,202,203


CMO 3: people with complex health and care needs, and their familycarers, are likely to need support, such as appropriate decision tools,and space and time to ask questions and discuss options, in order forthem to be willing and able to participate in SDM

25,31,69,103,108,112,115–117,120,121,153,158,159,165–167,170,171,173,

175–177,180,186,187,192,196,197,200,204,207


CMO 4: a wider cultural change that includes SDM [e.g. family-centred approaches, changes in power dynamics and patients andcarers taking (or sharing) responsibility for their health and thedecisions that affect them], triggers the development of a sharedexpectation of (and familiarity with) SDM among patients, carers andHSCPs leading to improved patient outcomes

25,31,103,104,107,114,116,118,120,164,168,177,200,202


TABLE 12 Examples of supporting evidence from stakeholder interviews

Programme theory/supporting evidence

CMO 1: reflecting patient and carer values

Patient capacity toaccess and use care

It [refers to SDM] makes it easier to avoid situations where people either don’t understand whatthe medication that they’re being prescribed is for, when to take it, how to adjust it with othermedication that they may be on, and so on. It can lead to . . . to a plan which is grounded inshared expectation.

SH06

Interprofessionalapproaches to PCC

So whether someone is seeing one clinician all of the time and over time making a number ofdecisions, or if they’re being seen in five different clinics over the course of whatever, the factthat that ethos of person-centeredness is embedded across that, you know, and their informationshared and they build on it . . .

SH15

Patient feels involvedand engaged

. . . when you’re offered an opportunity to discuss your own care you feel as proud as anything . . .SH02a

Patient-centredapproaches

. . . he then saw where we were going with his treatment . . . he was an active participantwhereas before he’d been very much, ‘No, I don’t want to do this, I don’t want to do that.

SH10

Goal-setting I think the Year of Care Programme is another example of that, which was started in diabeteswhich focused on, you know, care and support planning, that’s how they framed it butessentially is about people making decisions together about what matters to them, setting theirgoals and then making decisions about what treatments and other things will support that.

SH15

Adherence From the clinicians’ point of view, the benefits [refers to SDM] are that there’s an increasedlikelihood of adherence to clinical plans and to prescribed medicines. It leads to better use ofresources . . .

SH06

Feeling valued The consultant even phoned me at home and said, ‘This is what’s happening, this is what weneed to do,’ so I was fully involved when my mum, you know, lost capacity for those few days,and I felt very valued . . .

SH07a

RESULTS


28

TABLE 12 Examples of supporting evidence from stakeholder interviews (continued )


Continuity: individualand system based

. . . when you’re talking about allowing them to develop the relationship, are we thinking aboutcontinuity over time or are we thinking that actually we’ve just got a system that supportsperson-centred care and that values that as part of any consultation.

SH15

CMO 2: systems to support SDM

Risk . . . on Monday that I had, a patient who has quite significant dementia who’s in her 90s, andthere’s a lot of sort of indecisions about where, whether she should be at home, whether sheshould be in a care home or supported accommodation. There are clearly, you know, now somerisk issues by her remaining at home on her own, but, you know, after a lot of sort of decisionand discussion, I guess, you know, the decision was that it’s best, that’s where she was best tobe even though we were all expecting some degree of risk . . .

SH03

. . . she said, ‘No, I don’t want to take any tablets, thank you very much. I know the risk.’That’s fine . . .

SH10

System-basedapproaches

. . . we work with clinical colleagues here who do that [send results to patients before aconsultation] in diabetes a lot and that works well and it just seems to make sense doesn’t it?You don’t go along to your bank manager and have a discussion about your bank accountwithout knowing what your balance is . . .

SH20

. . . crucially, the patient is able to see the outcomes of all of those tests in advance of their careplanning discussion, which means that they’re able to think about what that means for them,and a good care planning template will have on the front some free text boxes which askquestions like, ‘What’s most important to you to discuss in the care planning conversation?’‘Have there been any changes since we last spoke that you’d like to raise?’ ‘Do you have anyquestions?’ and so on, which means that the conversation, alongside taking into account theperson’s clinical needs, also gives an invitation, I suppose, to the person, to feed in the otheraspects of their life . . .

SH06

CMO 3: preparing for the SDM encounter

Family involvement So if you’re doing a care planning meeting with an older adult with multiple conditions that yougive them a chance to have a think about it, often with their family member as well.

SH10

Choice So it’s not about what people want, it’s about where there are options, understanding, so thepatient and carers need to understand what the options are, you know, what the risks, thebenefits, the consequences of the different options are and they need to understand what’simportant to them in deciding between them.

SH20

Asking questions . . . the provision of really high-quality information for people, we know that that makes a reallysignificant contribution for people, increasing their confidence, potentially increasing their levelsof literacy, in terms of their understanding of their condition and how it impacts on their life, butalso being more confident to ask the questions that they need to from their clinicians, and tooffering their own perspective . . .

SH06

. . . there was a video for patients and there was the ‘ask three questions’, materials that wereused throughout . . . showing the video on, you know, in the waiting room in the GP’s surgery orwhatever, that actually that had little or no impact on increasing the likelihood of patients askingthose questions of their health care professional, but where it did have an impact is that it meantthat the clinicians were much more likely to prompt patients around those questions.

SH15

Medical authority . . . my parents, because they were both in their 90s when they died, they would assumesomebody with, anyone medical had authority.

SH17

continued



29

Context–mechanism–outcome 1: reflecting patient and carer values

Programme theory: systems that enable HSCPs to develop relationships with patients and carers, and witheach other, and that allow them to understand and assess individual needs and patient and carer capacityto access and use care, will activate trust and engagement, leading to better outcomes for patientsand carers.

The components of this CMO can be seen in Figure 4. The figure illustrates the interaction between thecontexts and mechanisms and the potential outcomes.

Understanding the needs and priorities of service usersMany studies recognise the importance of considering patients’ and, when appropriate, family carers’preferences and values in the decision-making process,63,105,113,119,203 not least because ‘decision-making isgrounded in the personal and social context of an individual’s life’.105 Despite this, the evidence shows thatindividual needs and circumstances of patients and their family carers are frequently not understood ortaken into account.107,157,179 In a systematic review observing the extent to which HCPs involve patients indecision-making across a range of clinical contexts, the least observed behaviours were those that involvedenquiring about the patients’ preferences.107 This implies that interventions aimed at improving thetailoring of care to patient preferences are needed. This is supported by the Making Good Decisions InCollaboration (MAGIC) study,177 a 3-year project to test and identify the best ways to embed SDM intoroutine primary and secondary care using quality improvement methods. In their training sessions, the

TABLE 12 Examples of supporting evidence from stakeholder interviews (continued )


CMO 4: SDM as part of a wider cultural change

Power differentials . . . the power differentials are one of the bigger barriers to shared decision making and so it isabout recognising, it’s a fairly simple thing to say, but recognising there are two experts, that theclinician who understands the options and the risks, the benefits, the consequences and so forthand the patient who understands what’s important to them.

SH20

Change . . . how we have always framed, you know, our shared decision making and ourself-management work is that this was part of essentially a transformational change . . .

SH15

Wider change . . . there is no intervention that creates culture change, whatever it is, but it’s absolutely rightthat it has to happen and that happens because all sorts of different things get aligned if you likebut that takes time and it has all the issues that you’ve already talked about around systems,skills, attitudes, education, training, patient roles, all of those things need to be aligned . . .

SH20

Changing attitudes Yeah, so I think some of it will be attitude changes, I think some of it will be cultural. I thinksome of it will come, so we are seeing shifts within new care models to, you know.

SH06

Culture . . . really good quality, shared decision-making, comes largely from the culture, and throughcommunication and between clinical teams and people . . .

SH06

Patient responsibility . . . changing attitudes and experiences of patients can be at times as much a barrier to shareddecision-making as the attitudes of the clinicians.

SH20

Attitudes . . . there are some really important attitudinal underpinnings that need to be addressed beforeyou can even do the skills training . . .

SH20

Reproduced with permission from Bunn et al.208 This is an Open Access article distributed in accordance with the terms ofthe Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon thiswork, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/.

RESULTS


30


researchers found that ‘the teams were generally already good at recognising options and discussing themwith patients, but there was potential to improve their communication of risk and the task of exploringwhat matters to patients’177 (risk is discussed further in CMO 2). An observational study of people withcancer and multimorbidities suggests that it is more important for HCPs to consider values that are stableover time rather than goals and preferences that are more context or circumstance specific.63 This ofcourse assumes an ongoing and sustained relationship between service user/patient and provider.

Information-sharing difficulties and goal divergence may arise for any number of reasons. These includeHSCPs having difficulty identifying and explaining patient preferences,68,104 differences in the way patientsand clinicians interpret and frame the patient’s health problems,189 clinicians being reluctant to engage inSDM when the patient’s preferences are not in line with clinical guidelines185 or when there are concernsabout safety or cognitive function.179

There are also system-level barriers. A qualitative study in primary care in the UK investigated gapsbetween lay and medical discourse in care planning.189 It suggests that electronic records ‘can marginaliseaspects of care which lie beyond a biomedical focus or contractual requirements’.189 Patients’ narrativescould be misunderstood or reframed when they were formally recorded. A focus on a biomedical agendawas also identified in a qualitative study exploring the extent of PCC and SDM with adolescents withtype 1 diabetes mellitus.175 It found that when patients tried to raise themes or concerns of their own, theywere often interrupted by professionals who were trying to restore a biomedical agenda.175 The authorsargue that health professionals concentrated on educating patients about biomedically optimal self-carerather than considering the patient’s preferences and how these might affect adherence.

Several studies explored interventions aimed at helping to identify patient and carer preferences. Aqualitative study from the UK reported on the development of a primary care-based complex interventionfor patients with multimorbidity.181 The intervention involved establishing and maintaining therapeuticrelationships with patients and a person-centred approach. Patients appreciated the time, being able to askquestions, being listened to and having their goals acknowledged. The intervention is due to be tested in acluster RCT. A RCT conducted in the Netherlands155 evaluated the impact of proactive care planning and

Continuity of care

Patient-centredapproaches

Interprofessionalworking

Understandingpatient and carer

goals (and how they might change over

time)

Patient/family carer feeling heard

and respected

Trust

Patient and carer feel involved

and engaged in decision

Improved patientand carer satisfaction

with care

Adherence totreatment

Satisfaction withdecision

Context Mechanisms Outcomes

FIGURE 4 Summary of CMO 1: reflecting patient and carer values.



31

goal-orientated integrated care. Although GPs reported some improvements (e.g. a perception that therewere fewer unexpected demands on care) there was no significant change in patient quality of life orfunctional status and only a small improvement in satisfaction levels. A pilot study tested the feasibility of aconversation tool for outcome prioritisation in medication reviews with older people.192 The tool increasedsatisfaction with medication use and the authors contend that knowing the individual’s preferencesappears to deepen the patient–doctor relationship. However, the mean consultation duration was 31 minutes,which, the authors caution, does not fit with routine medication reviews in family practice.

Developing relationshipsAchieving SDM depends on building a good relationship in the clinical encounter.17,113,182,194 The ability tobuild and maintain trusting relationships between HSCPs and patients/carers was seen as beneficial in theimplementation of collaborative approaches by staff157 and patients/service users165,171,178,181,183,188 and wasfound to have an impact on patient and carer perceptions of the quality of care.109,162,164 A systematicreview109 found evidence of a positive association between the quality of clinician–patient communicationsand adherence to medical treatments. For example, the odds of patient adherence were higher whenphysicians had received communication training.109 Longer consultations and physician verbal behaviour(such as exploring the impact of the condition or illness on the patient) have been shown to be associatedwith increased trust.210

Trust is also facilitated by continuity of care.68,113,174 However, a long-standing relationship with a clinicianmay lead a patient to assume that the clinician is aware of his or her values,159 whereas evidence suggeststhat there is often a mismatch between patients’ and clinicians’ views. For example, a qualitative study179

investigated alignment of goals between people with multimorbidity, their family carers and HCPs, andfound that, although there were some common goals (such as maintaining independence), there was alsoa significant amount of goal divergence. This was particularly the case when patients had significant illnesscomplexity, such as unstable/fluctuating health problems or cognitive decline, which posed immediate oranticipated threats to the safety of the patient or carer/caregiver.179

The importance of ongoing relationships and the ability to reassess changing priorities were highlightedin several studies. They were particularly important for people with complex needs or dementia as ‘thedominant chronic illness shifts over time as conditions and treatments change, and re-prioritisation occurs’;105

decision-making responsibility may shift over time, from the person with dementia to the informal or familycarer/caregiver.172 A review to develop a communication model to enable greater understanding of patient-centred communication and decision-making says that communication about complex medical issues oftenoccurs as ‘a series of conversations over time, with multiple clinicians involved.’182 In one review the authorssuggested that a failure to identify an association between empirical measures of SDM and health outcomesis because most studies focus on a one-off encounter.68 They added:

. . . one discussion between a clinician and patient may not lead to improved health outcomes.Instead, a long-standing relationship between a clinician and patient marked by patient-centred careand SDM may affect outcomes over time.

Shay et al.68

Interprofessional workingTrust and partnership working between different HCPs were described as key to decision-making for olderadults with complex needs.156,161,172,178 Facilitators of relational coproduction and interprofessional working(see Table 1 for definitions) include familiarity with one another and a history of working together, mutualknowledge and understanding of disciplinary roles, trust and respect, a shared understanding of SDM andeffective communication between individuals (including different HCPs and patients and carers).84,162,199

However, few studies addressed an interprofessional approach to SDM, with most studies targeting asingle professional group.144 A systematic review118 of interventions to improve HCPs’ adoption of SDMfound that only three studies targeted more than one HCP.

RESULTS


32

Légaré et al.84,93,144 have published several qualitative or descriptive studies exploring interprofessionalism andSDM. They created a model to help health professionals envisage a common goal and enhance the contributionof different health professionals to SDM.84,144 The model ‘factors in’ determinants at the individual or microlevel such as patient priorities, and at the meso and macro health-care system levels. Meso-level considerationsinclude the influence of individual team members’ professional roles and macro-level factors encompasshealth policies and social context. A decision coach who is trained to support the patient’s involvement indecision-making is seen as key to the process. They argued that by assigning particular tasks to specificmembers of the team the process can become more efficient. A UK initiative ‘The Year of Care’ also involvedteam members working together to facilitate decision-making.25 The initiative (which was piloted in over50 practices in England) first focused on people with diabetes mellitus. Care planning involved an initialconsultation with a health-care assistant (HCA) to work out what the patient wanted to do and undertakeweights and measurements; there was then a second consultation with a GP or specialist nurse to make a careplan. They reported improved patient experience and biomedical outcomes, although they suggested that itmay take 3–5 years for improvements to biomedical outcomes to become apparent.25

Several reports describe UK initiatives to promote interprofessional working and integrated care. Forexample, a case study of structured medication reviews in care homes, involving residents, family members,care home staff and HCPs provided qualitative evidence of the benefits of an interprofessional approach todecision-making:198

It used to be just the doctor and the pharmacist talking to each other. But actually having everybodyround the table, it’s just wonderful. It’s a game changer in terms of the decisions you make.

Pharmacist

However, it was not always easy for GPs to attend these meetings. Evaluation of holistic primary care forpeople with multimorbidities reported an increase in patient satisfaction and engagement and fewerunplanned attendances at the practice (although how this was measured is not clear). The initiativeinvolved cross-discipline training and the involvement of all clinical staff and the patient and their family inproducing, monitoring and updating a care plan to focus on quality of life for the patient.200

Patient/service user outcomesIn CMO 1 we suggested that resources such as a person-centred approach, continuity, good relationshipsbetween service users and providers and interprofessional collaboration in SDM lead to benefits such asimproved adherence and greater patient satisfaction. A systematic review110 including 43 RCTs found thatinterventions to promote a patient-centred approach in clinical consultations generally had a positive effecton a range of measures, although the impact on satisfaction, behaviour and health status was mixed.Another review focused on PCP.66 It reported improvements in some indicators of physical and psychologicalhealth status, and people’s capacity to self-manage their condition when in comparison with usual care. Theimpact was greater when the intervention was more comprehensive, intensive and better integrated intoroutine care.66

Systematic reviews of SDM have identified positive benefits to patients and carers such as feeling moreinvolved,117,119 an improved quality of life and reduced depression in carers,119 and improved affectivecognitive outcomes for patients, such as enhanced satisfaction and reduced decisional conflict.68 Theseimpacts (particularly on patient/service user satisfaction) are echoed in many of the other studies weaccessed.109 There is also some evidence that SDM leads to better treatment adherence.197 There is littleevidence, however, to suggest that there is an association between empirical measures of SDM andhealth outcomes.68

Context–mechanism–outcome 1: summaryThe evidence shows how systems that enable HCPs to develop relationships with patients/service users andtheir family carers trigger feelings of trust, engagement and respect that can lead to improved outcomessuch as patient and carer satisfaction with services and decisions. The quality of individual clinicians’



33

communication skills, and their ability to foster trusting relationships with older people and their families,is fundamental to SDM. In addition, there is also a need for systems that promote continuity of care boththrough ongoing relationships with one clinician (relationship continuity) and through system-basedapproaches that develops ways of working whereby the patient is linked to multiple professionals(management and informational continuity). SDM with older people with complex needs is likely to increaseappointment length. Although it is thought to improve adherence to treatment regimens, there is currentlylittle evidence to suggest a link to health outcomes or service use.

Context–mechanism–outcome 2: systems to support shareddecision-making

Programme theory: systems that are organised to encourage and prioritise SDM will lead to HSCPs feelingsupported (and equipped) to engage in SDM, resulting in SDM becoming part of the culture of care.

The premise of this CMO is that SDM may be conducted in a context in which it is not seen as a priority.Therefore, for older people with complex conditions SDM is hindered by the risk and uncertainty associatedwith complex conditions, and systems and structures that block communication between patients and thedifferent professional groups involved in their care. The programme theory is explained in Figure 5.

Organisation supportThe MAGIC study177 supported the link between organisational buy-in (e.g. identifying SDM as anorganisational priority) and an increase in HCP engagement with, and prioritisation of, SDM. It also affectspatients’ perceptions that the health-care organisation and clinicians want them to be involved.177

However, although SDM is a core part of policy in many countries, including the UK,211 at a service level,systems are not in place to incentivise or appropriately reward patient-centred practices and SDM.17,177

Support fromleaders

Appropriatetraining for HSCPs

Organisation ofsystems to support

SDM Professionalsengaged with SDM

Practitioners feelsupported – able towork with own and

others’ emotions

HCPs feelconfident that SDMis an organisational

priority

Patient and carer perception thatproviders attentiveto them and their

concerns

SDM becomesembedded

Patient and carersatisfaction withdecision-making


Protocols formanaging risk and

uncertainty

FIGURE 5 Summary of CMO 2: systems to support SDM.

RESULTS


34

Systems to support shared decision-makingIn the UK, the Year of Care initiative aimed to improve care for people with LTCs. A report from onepractice in North East England31 described the implementation of this initiative for people with multipleLTCs (the ages of participants were not specified). Although the report does not provide data on patientoutcomes, the staff felt that it improved the quality of conversations with patients. The report documentedkey stages in the SDM process, such as preparatory work before the actual consultation with the GP,when relevant information about the patient is gathered by other members of the primary care team.Appointments are longer than normal, with the length of the appointment being adapted to reflect patientneeds. In addition, all chronic disease monitoring is combined into one annual review, which involves acollaborative consultation, based on SDM and self-management support, via care planning.31,200 A qualitativestudy on information sharing also supports the idea of looking at health as a whole rather than in a series ofreviews focusing on specific chronic diseases.189

In the Year of Care approach adopted by one practice in the UK,200 patients are sent relevant test resultsbefore the consultation. This is an increasingly common practice in the UK. We found no formal evaluationsof this approach. Although a report from a GP practice in the UK said that despite concerns that such anapproach would increase patient anxiety and generate more work for clinic staff, this has not been thecase. It stated that ‘people are keen to have their own information and value the recognition that givesabout their involvement’.200

Managing risk and uncertaintySeveral studies highlighted the way that perceptions of risk or uncertainty affect decision-making. A paperon collaborative decision-making concluded that the uncertainty that complicates medical decisions is rarelyexplicitly addressed in decision support tools or medical consultations.182 One paper discussed the importanceof addressing uncertainty in SDM and proposed an uncertainty toolbox that includes the principles ofhonesty, recognition of emotion, hope, support/co-ordination of care, willingness to readdress issues, respectfor personal decisions and the acceptance that a lack of decision is possible.202 A cluster RCT tested a SDMtraining programme for newly qualified GPs in the UK. The training involved two aspects: (1) SDM trainingand (2) training in risk communication. The authors stated that doctors’ confidence and satisfaction with theprocess were greater if they received the risk communication training before the SDM training.167 However,the risk communication training was based on four discrete conditions and the study excluded people aged≥ 75 years.

TrainingThe need for enhanced communication skills for clinicians was a common theme across the papers.66,107,110,113,168

For example, a review of qualitative studies suggested that GPs need better communication skills, particularlywhen working with patients with complex needs.68 A number of the included studies evaluated the impactof training for HCPs on SDM. A review of interventions for providers to promote a patient-centred approach(of which SDM was seen as an important component) in clinical consultations found ‘generally positive effectson a range of measures relating to clarifying patients’ concerns and beliefs; communicating about treatmentoptions; levels of empathy; and patients’ perception of providers’ attentiveness to them and their concernsas well as their diseases’.110 Short training (< 10 hours) was as successful as longer training.110 Another reviewevaluating interventions to promote SDM found that interventions targeted at HCPs did lead to an improvementin SDM. Interventions that targeted professionals as well as patients were considered more effective thaninterventions that targeted only one of these groups.118

A cluster RCT of a SDM training programme for newly qualified GPs in the UK found that, althoughtraining increased GPs’ SDM skills (measured on the option scale), there were no statistically significantchanges in patient-focused outcomes.167 The length of the consultation and being seen in a protectedenvironment were linked to greater patient confidence in the decision and expectation to adhere to theirchosen treatments. A more recent RCT of SDM training for GPs found that, although trained GPs exhibitedless paternalistic decision-making, they were not judged (according to the control preference scale) to have



35

engaged in SDM.185 The study did not consider the impact on particular subgroups of patients such asolder people or those with complex health needs.

In a discussion piece, Elwyn et al.17 argued that the best way for clinicians to learn SDM skills is usingsimulations. This was supported by evidence from the MAGIC study in the UK. They reported thatinteractive skills training workshops based on a SDM model helped build coherence, improving skills andpromoting positive attitudes. They added that role play-based training, which emphasised practical skills,worked better than theory-heavy presentations. It was also considered important that clinical teams wereable to develop a shared understanding of how SDM might differ from their current practice.177 The impacton patients was unclear as the authors reported that ‘we found it difficult to identify or develop suitablepatient reported measures to capture experience of shared decision making’.177

Context–mechanism–outcome 2: summaryThere is evidence that organisational support, appropriate training for HCPs and system-based aspects,such as longer appointments, lead to HCPs feeling more supported and having the confidence to engagewith SDM. It can also result in increased patient satisfaction with decision-making because they feel thatservice providers are attentive to them and their concerns. There is a lack of studies addressinginterprofessional approaches to SDM or the training needs of providers other than doctors.

Context–mechanism–outcome 3: preparing patients, carers and healthand social care professionals for the shared decision-making encounter

Programme theory: people with complex health and care needs, and their family carers, are likely to needsupport, such as appropriate decision tools and space and time to ask questions and discuss options, inorder for them to be willing and able to participate in SDM.

Many patients, particularly those with complex needs and LTCs, are likely to find engaging in SDMdifficult. Our CMO explores how interventions might provide resources that enable these barriers to beovercome. The programme theory is explained in Figure 6.

Decision aidsMuch of the literature we found on preparing patients and carers relates to the use of PDAs (see Appendix 2for more details of these studies). PDAs are tools designed to help people participate in decision-makingabout health-care options. They provide information on reasonable health-care options and are designedto help patients clarify and communicate the personal value they associate with different features of theoptions.212 They differ from health education information because they focus specifically on the decisionto be made.20 Systematic reviews provide good evidence that PDAs can have a positive impact on patientknowledge, decisional conflict, informed choice, participation in SDM and decision self-efficacy,20,69,103,108,116,121

including for those who are socially disadvantaged.69 Potential mechanisms relating to the likely benefits ofdecision aids include patients becoming more engaged,69 greater decisional self-efficacy,69 a greater feelingfor patients that they are involved in decisions,167 and that ‘being offered the opportunity to preparefor a meeting is seen as an indicator of mutuality’.171 However, those same systematic reviews provide littleevidence that decision aids improve health outcomes or patient adherence.

Older age, depressive symptoms and difficulties with the activities of daily living are associated withdecreased patient activation;170 interventions may therefore need to be tailored to older adults’ level ofpatient activation and address issues such as depression.170 A review of decision aids for older peoplereported that they improve older adults’ knowledge, increase their risk perception, decrease decisionalconflict and seem to enhance participation in SDM.121 These findings were supported by a patient-levelmeta-analysis that looked at the impact of characteristics such as age on the efficacy of decision aids.108

They found no difference, however, in concordance with chosen treatment. The authors highlightedseveral limitations of the current literature in this area; they found only one study108 in which the tool had

RESULTS


36

Advocates/coaching/patient

decision aids

Acceptance thatthere may not be a

‘right answer’

Space/time todiscuss options Patient/carer

communication anddeliberation skills

increased

Less fear of‘failure’/doing the

‘wrong’ thing

Patient and carer feellistened to and

understood

Confidence

Less decisionalconflict

Patient and carer – clearerawareness of ownobjectives/concerns


Culture enablespeople to ask

questions and setagenda

Patient and carer willing and able to participate in

SDM (activation)

Decisions reflectlong- and short-term

goals

Patient capacity toengage in SDM may

be affected byfactors such as

depression, lowerhealth literacy,

cognitive problemsand multimorbidity

FIGURE 6 Summary of CMO 3: preparing for the SDM encounter.

DOI:10.3310/hsdr06280

HEA

LTHSERVICES

ANDDELIVERY

RESEARCH

2018VO

L.6NO.28

©Queen

’sPrinter

andController

ofHMSO

2018.This

work

was

producedby

Bunnet

al.under

theterm

sof

acom

missioning

contractissued

bythe

Secretaryof

Statefor

Health

andSocialC

are.This

issuemay

befreely

reproducedfor

thepurposes

ofprivate

researchand

studyand

extracts(or

indeed,the

fullreport)may

beincluded

inprofessional

journalsprovided

thatsuitable

acknowledgem

entismade

andthe

reproductionisnot

associatedwith

anyform

ofadvertising.

Applications

forcom

mercialreproduction

shouldbe

addressedto:

NIHRJournals


forHealth


Trialsand

StudiesCoordinating

Centre,

Alpha

House,

University

ofSoutham

ptonScience

Park,Southam

ptonSO

167N

S,UK.

37

specifically been designed for older people, most participants in the study were younger older people(≤ 70) rather than the oldest old (≥ 80) and tools were not tailored to the needs of people withmultimorbidity. The authors argue that:

. . . it is doubtful whether it will ever be possible to provide relevant and evidence based informationtailored to all possible combinations of comorbidities in a single decision aid. This indicates that decisionaids for older adults might be most effective when combined with high quality patient-providerinteraction during consultation, with personal tailoring of the decision aid to the individual persons’context.

van Weert et al.121

In contrast, most of the tools included in the review were designed to be used by the patient at home orin a research interview rather than as part of a routine consultation with a clinician.

Although decision aids are seen to have advantages, a number of studies also outlined potential problemswith their use. In the MAGIC study177 the authors noted that a key finding of their programme was that‘skills trump tools, and attitudes trump skills’. They argued that:

. . . there will never be decision support tools for every decision; nor will every patient find themacceptable or helpful. The skills to have different types of conversations with patients are paramount,with or without an available tool.

Joseph-Williams et al.177

They concluded that short tools to use in the consultation are better than information sources used outsidethe consultation because they are better at facilitating discussion between the patient and clinician andare cheaper and easier to keep updated than an information source, such as a website. They cautioned,however, that there is a risk that brief decision aids may be used purely to enhance information transfer,rather than improving the way clinicians work with patients.

Another criticism of decision aids is that they do not address the essential first step of SDM, which ispreparing for the encounter.116 This includes perceiving the opportunity and personal ability to be involved,both of which were very important in our programme theory. A qualitative study with people with mentalhealth problems suggested that ‘concrete aids for considering and contributing to the preparation of thedecision-making occasion might reduce power differentials’.171 However, in a systematic review of barriersand facilitators of SDM, Joseph-Williams et al.116 argued that there is a need ‘to address the entry levelfactors to SDM, such as subjective norms and patients’ roles, before secondary process factors such asinformation provision and value clarification’.116 In addition, several studies proposed that the provision ofdecision aids will not necessarily mean that they are used, or, if they are used, that they will lead to SDM.114,166

CoachingAnother proposed way to help people in SDM is via coaching or facilitation. Studies on patients withcancer have found that when trained facilitators or navigators met with patients prior to their consultationwith a clinician, there was improved self-efficacy and reduced decisional conflict.153,173 However, one was afeasibility study173 and in the other rigour was low.153 A systematic review of coaching or guidance as partof SDM concluded that the evidence supports the use of coaching or guidance to better guide patients inthe process of thinking about a decision and in communicating their values/preferences with others. Themechanisms inferred from the paper are that if you improve patients’ deliberation and communicationskills, this will lead to empowerment and thus patients will feel better supported. But the impact onother outcomes, such as participation in decision-making or satisfaction with the option chosen is mixed.120

Moreover, the relevance of this review to our synthesis is only moderate as the studies mostly focused onsingle issues, such as screening.

RESULTS


38

Family-centred approachesResearch has underscored the importance of family-centred approaches for older people with complexneeds.58,213 However, similar to a previous realist review on engaging older adults in health-care decision-making,113 we found few studies that considered the involvement of family members and friends in SDM.A German pilot study reported on the development of a tailored e-health service for caregivers/carers ofpeople living with dementia and HSCPs.186,187 The aim of the tool was to facilitate communication betweenHCPs and informal carers and to empower the carers. Although not aimed at SDM, the interventionincluded an element related to preparation for doctors’ visits. The study suggested that such a tool mighthelp informal carers to feel more prepared for doctors’ visits (e.g. identifying questions).

One initiative to make it easier for patients and their families to engage in evidence-based decision-makingis ‘the three questions’ approach (AskShareKnow).214 Patients are encouraged to ask the following: whatare my options? What are the benefits and harms? And how likely are these?214 These questions havebeen shown to improve the information given by family physicians and increase physician facilitation ofpatient involvement. The authors considered the approach to be a potentially powerful intervention foraffecting physician behaviour without affecting the length of the consultation.214 It is possible that theapproach may be less successful with adults with lower-than-general levels of literacy.215

Permission/space to discuss optionsKey to CMO 3 is that SDM is undertaken in a context in which HSCPs, patients and their families are ableto discuss the value and effectiveness of proposed treatments and to set the agenda. A positive exampleof this comes from the Year of Care initiative, which described patients feeling free to ask questions,meaning that they feel that HCPs are interested in them as people and not just in the condition. The reportadded that the agenda-setting prompt had given patients permission to talk about things.31 This ties in with akey part of our CMO: that interventions or programmes need to create a culture that enables people to askquestions without feeling judged. Longer consultations are linked to greater patient satisfaction and improvedSDM,31,107,157,165,181,183,192 which is likely to be related to the opportunity for patients to ask questions and ‘feellistened to’.165,181 Patients also want to feel respected.178,188

However, there is evidence to suggest that clinicians’ attitudes act as a key facilitator or barrier toSDM.116,177 A study of older people’s experiences of health-care decision-making found that participantsoften felt unable to make their needs heard because clinicians rushed them or ‘closed them down’.159 Aqualitative study of information exchange in consultations found that patients and HSCPs may not be ableto reach a shared understanding because HCPs omitted relevant information or because patients oftenomitted relevant context or preferences during a consultation.158 Older people may be reluctant to voicetheir concerns or openly disagree with a doctor but instead avoid conflict by choosing not to adhere toprescribed treatment.159

Understanding that there is a choiceStudies have illustrated that the presentation of choices can substantially influence the decisions peoplemake. For example, framing risk in survival rather than mortality terms increases the probability thatpatients will consent to an intervention.207 Moreover, older people may not always be aware that there isa choice to be made.159 A qualitative study with older people receiving dialysis found that patients wereoften unaware that dialysis initiation was voluntary and held mistaken beliefs about their prognosis.180

Clinicians may find it difficult to present choices to patients because they are trained to display confidenceto patients. Their own discomfort with uncertainty might lead them to engage in more paternalistic stylesof decision communication.182

In some instances, the choice being made may be constrained by resource limitations, health-care policiesor evidence-based recommendations (such as guidelines). A qualitative systematic review of decision-making communication practices found that even when there is no alternative, exploring patients’ choicesand reasons can validate the patients’ participation and mean that they have still ‘participated in thedecision making process’.117 They added that pursuing agreement without engaging with patients’



39

reasoning may be treated as coercive. This was echoed in a knowledge synthesis182 of medical decisionmaking which concluded that:

Achieving shared mind will be more difficult when patient preferences are counter to the strongestclinical evidence. Under these circumstances, quality decision making will depend not only on clinician(s)and patient becoming aware of and understanding the other’s position, but also engaging in a dialogueto find common ground, identify and reconcile differences, and negotiate or compromise to reach acollaborative, agreed-upon decision.

Politi and Street182

The subject of coercion was also explored in a discussion paper that considered whether or not ‘clinical nudges’are ever compatible with SDM. The authors argued that in instances in which patients do not have authenticpreferences, clinicians are justified in using nudges in accordance with the best interest standard (e.g. theethical requirement that people who care for others will do so in good faith, placing their assessment of thatperson’s best interests above their own).207

Context–mechanism–outcome 3: summaryOlder people with complex health needs are likely to need support to participate in SDM. Although theevidence suggested that interventions, such as decision aids and coaching, can improve involvement inSDM, the impact on adherence or health outcomes is not proven. Moreover, most tools were not designed(and have not been tested) for the oldest old. Evidence suggests that if tools are used they need to bebrief, designed for use within a consultation and focused on facilitating discussion between the patient,family carer and HSCP. The right culture, that allows people time to ask questions and to discuss options,and staff with positive attitudes towards SDM are likely to be more important than tools for older peoplewith complex health and care needs.

Context–mechanism–outcome 4: shared decision-making as part of awider culture change

Programme theory: shared decision-making will only have a significant impact if it is part of a widercultural change [e.g. family-centred approaches, changes in power dynamics and patients and carerstaking (or sharing) responsibility for their health and the decisions that affect them], that triggers thedevelopment of a shared expectation of (and familiarity with) SDM among patients, carers and HSCPs.

The context for this CMO is the way current health and social care culture and norms, and powerimbalances between HCPs and patients and their family carers, can act as barriers to SDM. Significantprofessional, patient and carer resources are needed to provide enough leverage to overcome thosebarriers and improve service user outcomes. CMOs 1–3 all feed into CMO 4. The programme theory isexplained in Figure 7.

Time and resourcesThe programme theory outlined in CMOs 1–4 puts forward many barriers to SDM and it is clear that relyingon individual clinicians or patients to implement SDM without system-based support is unlikely to besuccessful or sustainable.114,116,118 Several of the papers we included have described system-based changesthat involve person-centred, integrated approaches to people with LTCs,25,31,164,200 of which SDM is an integralpart. A report describing the implementation of the Year of Care initiative in the UK suggested that valuingthe development of staff is as important as valuing the expertise and lived experience of the patient.31 Thisinitiative reported increased staff and patient satisfaction.25,31,200 One site reported that the quality outcomesframework (QOF) figures had not been negatively affected by the new ways of working.200 Overall, it issuggested that similar initiatives (data not given) will take 2 or 3 years to make a difference to clinicaloutcomes as ‘habits of both patients and professionals die hard and engagement increases over a numberof care planning cycles’.200 This is reflected in our programme theory, which argues that familiarity and a

RESULTS


40

shared expectation of new ways of working (which include SDM) are crucial, but these are likely to take timeto develop.

Patient activation or engagementThe willingness or ability of patients to participate in SDM is a key contextual factor in our programmetheory (see CMO 3). This is supported by the literature107 and also underscored by our interviews withstakeholders. In general, the consensus is that the majority of older people would wish to be involved indecision-making104 but in practice they are often not encouraged to participate in SDM.104 Reasons for thisinclude limited time, poor continuity of care, environmental conditions, organisational inertia, a biomedicalfocus, concern about disruption to routines, clinicians’ belief that they are already practising SDM and powerimbalances.114,116,168,202,216 Patients may feel unable rather than unwilling to share in decision-making.116,177

Joseph-Williams et al.177 suggested that, for older patients, their previous experiences are likely to give theman expectation of a paternalistic approach from clinicians. Although many SDM initiatives involve givingpatients more information, this alone is not enough; patients need knowledge and power to participate inSDM.102,116 A systematic review of patient-reported barriers to, and facilitators of, SDM suggested that powermay be linked to perceptions of permission to participate in decision-making, perceived influence ondecision-making, confidence in own knowledge and self-efficacy in SDM.116

OutcomesA systematic review of tools to promote SDM in serious illness suggested that decision aids have thepotential to reduce health-care intensity and costs by decreasing unwanted major high-cost interventionsor hospitalisations but that these outcomes have not been studied.103 Another review suggested that as aresult of SDM, patients tend to choose more conservative options.20 One particular area in which there hasbeen overlap between SDM and care for older adults with complex needs (which has a potential impact onresource use and patient outcomes) is around medication and, in particular, deprescribing. Deprescribinghas been defined as ‘the process of withdrawal of an inappropriate medication, supervised by a healthcare professional with the goal of managing polypharmacy and improving outcomes’.217 Inappropriate

Staff, patients, carersprovided with time and

resources for SDM

Permission toparticipate in DM

Familiarity/sharedexpectation of SDMprocess (develops

over time)

Improved patientoutcomes

Patients’ priorities/decisions incorporatedinto notes/care plans

Mechanisms Outcomes

Care is organisedaround needs ofpatient and carer

Increased staffsatisfaction

Staff, patients, carers have shared

understanding/expectation of SDM

Staff (and patients) have the right attitude,

skills and toolsConfidence

Patient activation

Context: created as a result ofresources, mechanisms and

outcomes provided from CMOs 1–3

FIGURE 7 Summary of CMO 4: SDM as part of a wider cultural change. Reproduced with permission fromBunn et al.208 This is an Open Access article distributed in accordance with the terms of the Creative CommonsAttribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, forcommercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/.



41


medication would include that which does not fit with the goals of treatment, does not align with patientvalues or is overly burdensome.218 Although this was not the focus of our review, we did consider severalstudies that focused on deprescribing in a context of SDM. A project in care homes in the UK investigatedstructured pharmacy reviews for older adults.198 The reviews, which involved the pharmacist, patient, familycarer, GP and care home staff, significantly reduced unnecessary prescribing across care homes andreduced the risks of harm to residents caused by medication.

Context–mechanism–outcome 4: summaryWe suggest that SDM is likely to be most effective when it involves service providers who have the rightskills, attitudes and tools, working in systems that are structured to support service providers and users toengage in SDM. Key to this is a culture that involves person- (and family-) centred approaches. Although ashared expectation of, and familiarity with, the process is essential to its success, this is likely to take timeto develop. The evidence indicates that such approaches may lead to improved service user and providersatisfaction with services and with the quality of decisions, but there is little research on the impact onhealth-related outcomes.

Chapter summary

The CMOs presented in this chapter are evidence-based statements that identify interventions, or elementsof interventions, that are likely to promote SDM with older people with multiple long-term health andsocial care needs and their family carers. It identifies how they are thought to work, on what outcomes,and why, in some instances, they may not work. The CMOs are presented individually but in practice theyare integrated and interactive. The implications of the results are explored further in the next chapter.

RESULTS


42

Chapter 4 Discussion

This chapter includes text from Bunn et al.208 This is an Open Access article distributed in accordancewith the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to

distribute, remix, adapt and build upon this work, for commercial use, provided the original work isproperly cited. See: http://creativecommons.org/licenses/by/4.0/.

The overall aims of this study were to provide a context-relevant understanding of how models to facilitateSDM might work for older people with multiple health and care needs, and how they might be applied tointegrated care models. We used an iterative three-stage approach that optimised the knowledge andnetworks of the research team and that was guided by the RAMESES criteria for realist review.72 In thischapter we start by giving an overview of the findings and their implications. We then discuss thelimitations of the study and conclude by outlining suggestions for practice and future research.

Summary of findings

There is a lack of evidence relating to older people with complex needs and SDM. Only 29 of the 88included items were specifically focused on older people or people with multimorbidity or a LTC (see Table 2)Furthermore, the majority of these studies were qualitative or observational rather than quantitativeevaluations of interventions. The rest of the evidence related to HSCPs (e.g. relating to training needs orattitudes towards SDM), younger populations or the ages of the participants was not specified. This evidencewas included, however, because of the opportunities provided for transferable learning.

Despite the constraints of the current evidence base we were able to develop an explanatory account of whatSDM should look like for older people with complex health and care needs. The theory draws on four CMOconfigurations that together provide an account of what needs to be in place for SDM to work for olderpeople with complex needs (Table 13). The configurations highlight the importance of understanding patientand carer values, the organisation of systems to support SDM, the need to support and prepare patients andfamily carers to engage in SDM, and the need for wider cultural changes of which SDM is a part. The CMOsare grounded in evidence from the literature and stakeholder perspectives. Although designed to be specificto older people with complex needs, the CMOs are also likely to be relevant for other patient groups livingwith long-term and complex conditions.

Key features of programmes

ContextThe CMOs highlight several contextual factors that are likely to affect the success or otherwise ofinterventions or programmes to facilitate SDM with older people with complex health and care needs.These operate at individual, team and broader organisational levels (Figure 8):

l At the macro or broader organisational level, a key context is to what extent systems legitimise andprioritise SDM for people with complex needs. Evidence from this review suggests that, for SDM tobecome embedded, there needs to be a level of organisational support that will trigger confidence inHSCPs that SDM is an organisational priority.114,219

l Meso-level factors relate to the way the team is organised and the extent to which services supportand resource professionals, patients and family carers to have the time and skills necessary to be ableto engage in SDM.

l At the individual level, there are specific requirements needed of the workforce so that they can work inpartnership with patients and family carers. For example, developmental needs around communicationskills and how they define their role as a health or care professional working with and for older peopleover time. Maskrey and Gordon220 talk about the need for ‘a lifelong curriculum of learning’ in order todevelop a shared understanding with patients.



43


MechanismsA realist approach argues that exposing the resources and reasoning within mechanisms and theirrelationship to the context of their implementation is key to the evaluation of a complex programme ofchange.221 Mechanisms are dynamic and may be interacting with each other;222 for example, in ourprogramme theory, trust in HSCPs is likely to operate in parallel to patients and carers feeling heard andrespected. In addition, what is seen as a mechanism or outcome, in one CMO, such as SDM becomingembedded, may, in turn, become a context in a subsequent CMO.223

Our review suggests that interventions or programmes to promote SDM between HSCPs and older peoplewith complex needs will have a greater chance of ‘working’, that is, engaging people in SDM andpotentially improving satisfaction and health outcomes by paying attention to those activities or contextsthat engender the following mechanisms:

l Trust between patients, family carers and HSCPs.The evidence60 suggests that relationship continuity (e.g. a continuous therapeutic relationship with oneor more health professionals over time), is an important resource that engenders trust and the relatedmechanism of confidence in patients and family carers. This requires face-to-face contact to encouragethe person to participate in SDM.

Individual (micro) level

• HSCPs’ skills (e.g. communication skills)• Attitudes (e.g. towards SDM)

Team/organisational (meso)level

• Continuity• Person-centred approaches• IP working• Space/time/culture• Tools

System (macro) level

• Organisational and national policies• Support from leaders• Social contexts (subjective norms and patients’ roles)

FIGURE 8 Summary of contextual factors at individual, team and system levels. IP, interprofessional working.

TABLE 13 Summary of the four CMO configurations that inform the programme theory

Name of CMO Details of CMO

1. Reflecting patient and carervalues

Systems that enable HSCPs to develop relationships with patients and carers, and witheach other, and that allow them to understand and assess individual needs and patientand carer capacity to access and use care, will activate trust and engagement leadingto better outcomes for patients and carers

2. Systems to support SDM Systems that are organised to support and prioritise SDM will lead to HSCPs feelingsupported (and equipped) to engage in SDM, resulting in SDM becoming part of theculture of care

3. Preparing patients and familycarers for SDM

People with complex health and care needs, and their family carers, are likely to needsupport, such as appropriate decision tools, and space and time to ask questions anddiscuss options, in order for them to be willing and able to participate in SDM

4. Wider cultural changes thatincludes SDM

SDM as part of a wider cultural change [e.g. patient- or family-centred approaches,changes in power dynamics and patients and carers taking (or sharing) responsibilityfor their health and the decisions that affect them], that triggers the development of ashared expectation of (and familiarity with) SDM among patients, carers and HSCPs,leading to improved patient outcomes

DISCUSSION


44

l Trust between HSCPs.Evidence84 shows that in order for HSCPs to take an interprofessional approach to SDM there needs tobe trust and an understanding of each other’s roles.

l Confidence.Confidence is an important mechanism for HSCPs, patients and family carers. When HSCPs know thatSDM is an organisational priority and that services are organised to facilitate person-centred approachesto care they are more likely to engage in SDM. For patients and carers, confidence might be engenderedby interventions that increase their communication and deliberation skills (e.g. coaching, PDAs, longerappointments) and environments that mean that they are not afraid of ‘doing the wrong thing’ or beinglabelled difficult.224 Confidence may then in turn become a context that enables people to perseverewith SDM because they know that it is valued by those around them.

l Respect.Strategies to foster SDM are likely to be most effective when they are based on person-centredapproaches that trigger a feeling in patients and family carers that they are respected, listened to andunderstood.29,225 SDM is often conceptualised as an integral part of person-centred approaches tocare;110 indeed, it has been described as the ‘pinnacle of person centred care’.23 Respect amongdifferent HSCPs as well as between team members and the patient is also vital for interprofessionalSDM. This includes a sharing of power among the team members so that all members can shareknowledge and communicate effectively.84

l Familiarity/shared expectation.We suggest that confidence is also related to all parties (HSCPs, patients, family carers) being familiarwith the process of SDM and having a shared expectation of what this involves. Evidence (primarilyfrom stakeholders) indicates that this may take time as both sets of actors have to assimilate the coreassumptions of SDM and learn how to work together.200

l Permission to participate.Programmes and strategies to promote SDM should also look to trigger a sense of permission so thatall parties (patients, family carers and HSCPs) feel that they are able to participate in SDM. This mayarise, for example, through knowing that SDM is an organisational priority.

Implications of the findings

Shared decision-making for older people with complex health and care needsFor those most reliant on health and social care support, such as older people living with frailty and/or severedisabilities arising from LTCs, decision-making may be particularly complex. It requires consideration ofresource availability, the potential impacts of polypharmacy, the ability to obtain informed consent, thecapacity of patients to attend to health-care demands, the support networks available, potential safeguardingissues and the appropriateness of individual treatments for people with multimorbidity. Initiatives to addressthese have focused on aspects of care such as interprofessional working,226 case management227,228 and theuse of shared methods of assessment and planning (e.g. Comprehensive Geriatric Assessment).229 All of thesetend to be professionally initiated and directed. Although there is evidence230,231 that many older people andtheir family carers would like to be involved in decision-making, there is little evidence that relates specificallyto SDM with older people with complex health needs. The overwhelming majority of the evidence on SDMrelates to decisions about single conditions (e.g. prostate cancer or diabetes mellitus). It is more difficult toextrapolate this single condition-focused research to older people with multimorbidity. In addition, whenolder people are involved they are generally not the ‘oldest old’.121 There is no consensus on how SDM shouldbe structured or who should be involved, and few studies considered the involvement of family members inSDM when older people rely on them for ongoing support and care.

Person-centred approaches to health and care and consideration of the patient’s preferences and values iscentral to the SDM process.29 For older people with complex needs, eliciting preferences is likely to involveregularly revisiting decisions as the dominant illness, and priorities, may shift over time.105,172 However, theevidence suggests that doctors are better at recognising and discussing options than eliciting patient



45

DISCUSSION

preferences (see CMO 1). This may reflect the fact that different HSCPs conceptualise PCC in different ways.18,232 A review of literature on PCC suggests that, whereas the nursing literature tends to focus more on respecting patients’ values and beliefs in promoting PCC, the medical literature has devoted more attention to understanding the nature of the informed decision-making process between the doctor and the patient.232 What is not explored in the literature is whether or not integrated care and interprofessional working might enable different members of the MDT to draw on the skills of others in order to promote effective person-centred approaches to SDM.

The quality of individual clinicians’ communication skills, and their ability to foster trusting relationships with older people and their families, is fundamental to SDM. In addition, there is also a need for systems that promote continuity of care. Continuity can be achieved through an ongoing relationship with one clinician (relationship continuity) or a system-based approach that develops ways of working whereby the patient is linked to multiple professionals (management and informational continuity).60,233,234 The evidence would suggest that both need to be in place. Informational continuity is, however, often hindered by electronic systems not set up to record information relating to patient preferences and goals. For example, a study of record keeping in UK primary care found a gap between patients’ oral narratives and the way in which these are understood and recorded by clinicians. This suggests that universal adoption of electronic patient records in their present state will not alone achieve informational continuity between organisations.189

Enabling older people to participate in shared decision-makingContext–mechanism–outcome 3 relates to the need to help prepare and support patients and their family carers to engage in SDM. This is likely to be particularly important for older people with complex needs, as older age, depression (which is often linked to LTCs) and difficulties with activities of daily living are associated with decreased patient activation.170 The evidence highlights key contextual factors such as longer consultations, clinicians’ communication skills and a culture that allows people to ask questions without feeling judged. These are likely to lead to an increased ability and willingness to engage in decision-making through mechanisms such as feeling respected and understood.

Much of the literature on preparing patients and carers relates to the use of PDAs. Although there is some evidence that PDAs may enhance participation in SDM and decrease decisional conflict, very few studies include the oldest old, and tools are not designed for use with older people or those with multimorbidities.121

Moreover, PDAs on their own are unlikely to address what Joseph-Williams et al.116 calls the entry-level factors to SDM, such as subjective norms and patients’ roles. For older people, subjective norms235 may include the perception that there is a right and wrong decision, or that decisions should be made by doctors. HSCPs should actively consider the possibility that older people may be more hesitant than other age groups to express a wish that they feel is counter to that of the clinician,159 and that their attitude towards SDM may be affected by past experiences of a paternalistic approach from clinicians.116

Patient decision aids for older people are likely to be most effective when used as part of face-to-face interactions, ongoing patient–clinician relationships and patient-centred approaches.236 Hargraves and Montori237 argue that the real work of SDM is ‘collaborative deliberation in the face of uncertainty’237

which happens within the encounter between patients and doctors. Although this is a narrow conceptualisation of SDM, excluding family carers and other types of HSCPs, it does emphasise the importance of the conversation and the need to understand how factors such as decision aids, clinician skills, patient power and uncertain scientific evidence interact in the SDM encounter.237

Shared decision-making and the new models of careMany health-care systems, including the English NHS, are moving towards a more interprofessional health-care team-based approach.8 In integrated care sites, decision-making and communication may need to be negotiated between, and communicated to, multiple HSCPs and personal assistants directly employed by care users, as well as patients and their family carers. Despite this, the vast majority of the SDM literature relates to encounters between a single clinician (usually a doctor) and a patient, and there is a lack of studies addressing interprofessional approaches to SDM.118 In addition, when studies address the skills and attitudes needed for SDM, these focus


46

almost exclusively on doctors. For interprofessional SDM to work, the development, and involvement, of all staff isimportant and power imbalances need to be addressed.25 Doctors’ real and symbolic power is still strong and maybe a barrier to interprofessional decision-making.84

The literature does provide some examples of how decision-making might be negotiated between apatient and several clinicians. For example, a case study of medication reviews in care homes involvedmeetings between residents, family members, care home staff, a pharmacist and (when possible) a GP.191

Another example of an interprofessional approach to care planning (which involves SDM) comes from theYear of Care initiative when care planning involved a first consultation with a HCA who helped the patientwork out ‘what they want to do’ followed by a second consultation with a GP or specialist nurse to makea care plan.25 Both reported positive outcomes.

Légaré et al.84,144 have developed a model of interprofessional SDM, which incorporates the use of adecision coach who is trained to support the patient’s involvement in decision-making. They suggest thatthe decision coach could be a member of the team, such as a nurse or a therapist. A lack of time is acommonly cited barrier to SDM114,116 and the employment of members of the MDT as coaches could createmore space and time for SDM. Although there is evidence to support the use of coaching to aid patientsin the decision-making process, we found little evidence specific to older people with complex needs.In addition, the model proposed by Légaré et al.84,144 does not appear to have been tested in practice;forward citation tracking from these papers suggests that the literature continues to be descriptive andexplorative rather than describing the development and evaluation of interventions to promoteinterprofessional SDM. Although it is suggested that interprofessional approaches to SDM could improvequality of care by fostering continuity in the decision-making process, this has not yet been tested.144

Shared decision-making and the reduction of unnecessary health servicesThere are several different paradigms underpinning SDM.13 Imperatives behind SDM include policy drivers,moral arguments, the need to address uncertainty, the wish to deliver PCC and the potential for SDM toincrease patient activation leading to improved self-management of LTCs and, in turn, improved healthoutcomes. There is also a suggestion that SDM can be used as a tool to reduce resource use or unnecessarytreatment.143 All of these assumptions are apparent in the literature although perhaps the strongest is thatSDM (either on its own or as part of PCC) is morally right.

There was some evidence from the literature of a crossover between SDM and campaigns to reduce theuse of harmful or unnecessary health services. For example, the Canadian initiative ‘choosing wisely’includes in its framework the need for supporting SDM at the clinical level,238 and the promotion of betterconversations between patients and physicians to facilitate informed decisions.239 However, an evaluationof the ‘choosing wisely’ literature suggests that this does not meet criteria for SDM documentationbecause the patient materials presented imbalanced information and most did not provide an opportunityto clarify patient values and preferences.145 It is also possible that if such approaches are seen by patientsand family members as a way of rationing care or denying access to treatment, then it would be difficultto trigger the important mechanisms of trust and confidence needed for SDM.

Changing the cultureIn CMO 4 we suggest that SDM needs to be situated in a context of wider changes in the culture andorganisation of health-care systems. This CMO incorporates components from the previous CMOs, suchas organisational resources (time and space), systems to support SDM and skills development throughcontinuous practice development. These wider changes are important to trigger mechanisms such asfamiliarity and confidence. This familiarity, which develops over time, is necessary for both HCPs andpatients and their families. It includes an understanding that patients and (when appropriate) their familycarers have responsibility for their health and the decisions that affect them. Theories of organisationalreadiness for change in health-care settings suggest that, in order for change to occur, members of anorganisation need to feel committed to implementing an organisational change and confident in their



47

collective abilities to do so.240,241 Such confidence is linked to an understanding of how to implement thechange, having the available resources and current situational factors.

Clearly important to CMO 4 are person-centred approaches, and we suggest that desirable outcomes of aSDM approach would be that care is organised around the needs of the patient and family carer and that thepatient’s priorities are incorporated into actions, notes and care plans. McCormack and McCane86 argue thatPCC is about having a specific person-centred culture rather than PCC by itself, and that it should be practisedby everyone in an organisation. He writes that ‘person-centredness can only happen if there is a person-centred culture in place in care settings that enables staff to experience person-centredness and work in aperson-centred way’.86 Person-centred SDM includes supporting patients so that ‘they feel capable ofacquiring and understanding knowledge about the available options, and so that they value their personalknowledge contribution to SDM’.116

Strengths and limitations

One of the main limitations of this review is the lack of evidence around interventions to promote SDM inolder people with complex health and care needs. Evidence from stakeholders and from the literaturesuggests that older people with complex and competing health and care demands (and when depressionis a common comorbidity) may need considerable support to enable them to engage in SDM. This canbe exacerbated when there are issues such as deprivation, low health literacy or cognitive impairment.Although we found literature on interventions designed to improve patient involvement in decision-making(e.g. decision aids, coaching and care planning done over several consultations), there is a need for morework that specifically focuses on older people with complex needs. Models for health-care delivery ofteninvolve a variety of health and care professionals (such as nurses or HCAs providing some chronic illnessmanagement in primary care), whereas the majority of evidence concerns decision-making involving asingle doctor and a patient. Although there is literature relating to interprofessional SDM, much of this isdescriptive, for example, describing potential barriers to and facilitators of interprofessional SDM.

The outcomes specified in our protocol included patient experience, patient safety and clinical effectiveness.Outcomes reported in the studies, however, largely related to patient experience. There is good evidence thatSDM has positive benefits for patients and carers such as feeling more involved, improved satisfaction andreduced decisional conflict. The evidence on the impact on adherence is mixed and there is little evidence tosuggest an association between empirical measures of SDM and health outcomes. Moreover, little of thisevidence is directly relevant to older people with complex needs or considers potential unintendedconsequences of SDM, such as the consolidation of health inequalities.242,243 In addition, where SDM is part ofa whole system change, such as in the vanguard sites, it is difficult to attribute particular outcomes to SDM.

In realist reviews the aim is not so much to summarise all the available evidence but rather to make senseof it.244 Searching tends, therefore, to be iterative and ongoing throughout the review process with theaim of identifying sufficient sources for theory building and testing. To identify studies in phase 2 of ourreview, we did not undertake one overall search but instead conducted 11 separate searches that focusedon aspects of the programme theory identified in phase 1. This was supported by extensive lateralsearches, such as forward and backward citation tracking, and keyword searches on Google Scholar. Suchlateral search techniques have been identified as particularly important for realist reviews.245 Despite thisextensive searching it is possible that we missed potentially relevant literature. However, the nature ofrealist methodology means that there is not a finite set of relevant papers to be found. Instead, thereviewer is able to take a more purposive approach to sampling that aims to reach conceptual saturationrather than identify an exhaustive set of documents.148,149

The unit of analysis in realist methodology is the programme theory, or underpinning mechanism of action,rather than the intervention.149 This meant that we were able to draw on a wider literature that providedopportunities for transferable learning, for example, studies involving people with LTCs or mental health

DISCUSSION


48

problems. This enabled us to develop a theory-driven explanation, in the form of four CMO configurations thatmake up a programme theory, which can inform initiatives to promote SDM for older people with complexneeds. However, although the ability to draw on a wider range of literature for realist reviews is an advantage,it does also raise the issue of when to stop searching. As already stated, this is largely based on judgementsaround theoretical saturation, but it is also influence by external factors, such as time and funding.91

This review did not include formal assessment of the quality of included studies. This is because in realistreviews the traditional hierarchy of evidence is rejected in favour of an approach that prioritises the waystudies contribute to the development of programme theory. For example:

Do the inferences made in a study gel with those from other studies?Reproduced with permission from Pawson246

Realist review is concerned with theoretical depth and transferability rather than with developing statementsor recommendations that have statistical certainty about questions of effectiveness or cost-effectiveness(Pawson et al.149). In line with this approach, we assessed evidence on how it contributed to our theorydevelopment. As part of our data extraction process, we assessed the relevance and rigour (was it ‘goodenough’) of the evidence.71,149 This included an appraisal of whether or not it provided valuable information,could be relied on and contributed to the review.

Older people with complex health and care needs are often reliant on others, typically family members, toadvocate or negotiate access to care on their behalf.58,213 Family members also often provide significant emotionaland practical assistance.58 Models, such as the triangle of care32 and person-centred approaches, recognise thatfamilies are often crucial allies for quality and safety.2,32 Despite this, recent research has found that, althoughservice providers recognise the contribution of family carers to the co-ordination and management of care, thisdoes not translate into routine engagement of family carers in decision-making for people with dementia andcomorbid conditions.58,213 Although some of the literature we included in this review made reference to theinvolvement of family carers, we found no formal evaluations of such an approach.

Stakeholders are important in realist work and the realist synthesis focus is driven by ‘negotiation betweenstakeholders and reviewers’.71 We had originally intended to interview up to 20 stakeholders in phase 1and 10 in phase 3, but in the end, were only able to recruit a total of 21 stakeholders over both phases.This is fewer than we had intended but the stakeholder views were still important in clarifying the focusof the review and validating the programme theory. In addition, input from our advisory group and our PPImembers helped to shape our programme theory.

Conclusions

Programmes that are likely to be successful in creating shared understanding and shared decision-makingbetween service users and providers are those that create trust between those involved, that allow serviceusers to feel that they are respected and understood and that engender confidence to engage in SDM.We suggest that confidence is likely to take time to develop as it is related to the development of a sharedunderstanding and expectation of SDM between service users and service providers. The cultural shift thatis needed to embed SDM in practice may require new ways of working for HSCPs and a shift away from abiomedical focus to a more person-centred ethos that goes beyond the individual patient encounter. Toachieve this HSCPs are likely to need support, both in terms of the way services are organised and deliveredand in terms of their own continuing professional development. This cultural shift also involves an expectationthat patients and their family carers will take a greater responsibility for their health and the decisions thataffect them, and they too may need support to engage in SDM. How this support might best be providedneeds to be further explored, although face-to-face interactions and ongoing patient–professionalrelationships are clearly key. Support needs to ensure that well-meaning attempts to focus on patient goalsdo not increase health inequalities.242



49

Models of SDM for older people with complex health and care needs should move away from thinkingabout SDM purely in terms of one encounter between a doctor and a patient. Rather, SDM should beconceptualised as a series of conversations that patients, and their family carers, may have with a varietyof different health and care professionals.68,144,182 Such an approach relies on continuity of care fostered throughgood relationships between service providers and users, and systems that facilitate the communication ofinformation, including that about patient goals and preferences, between different health and care professionals.

The literature on SDM involving older people or those with complex needs is largely qualitative ordescriptive and there are very few evaluations of interventions specifically designed to promote SDM withthis group or with their family carers. This review suggests that there is need for further work to establishhow organisational structures can be better aligned to the needs of older people with complex needs. Thisincludes a need to define and evaluate the contribution that different members of the HSCP team canmake to SDM for older people with complex health and care needs.

Implications for practice

The following implications for practice have emerged from the review.

Systems and culture

l The evidence suggests that SDM is only likely to become embedded if it is regarded as an essentialcomponent of ‘good’ healthcare and is linked to a culture of person-centred approaches throughoutan organisation.

l The evidence suggests that a culture that allows people time to ask questions and to discuss options,and staff with positive attitudes towards SDM, are likely to be more important than decision supporttools for older people with complex health and care needs.

l The evidence suggests that there is a need for visible organisational support in order for SDM tobecome embedded. This includes visibility in internal policy documents, through financial andorganisational support (e.g. enabling longer appointments when necessary, providing appropriateadministrative support) and through the inclusion of SDM in continuing professional development.

l The evidence suggests that systems that foster continuity of care both through ongoing relationshipswith one clinician (relationship continuity) and through system-based approaches that develop waysof working whereby the patient is linked to multiple professionals (management and informationalcontinuity) are important for SDM.

l It appears likely that in instances in which choices are constrained by resource limitations, health-carepolicies or evidence-based recommendations, it is still valuable to explore patients choices and reasons.

l Although properly conducted SDM may increase the length of consultations (such as those in primary care),there is evidence to suggest that they may be ameliorated by involving other members of the MDT in theSDM process.

l It is important that service providers and service users have shared expectations of, and familiarity with,SDM for it to become properly embedded. This is likely to take time to develop.

Education and training

l Our findings suggest that SDM education and training should be focused on all members of the MDTand not just doctors or lead clinicians. It should be part of undergraduate training programmes but alsopart of ongoing professional development.

l Evidence points to a need for SDM and communication skills training to include the task of exploringwhat matters to patients and how to elicit their goals and priorities.

l SDM training should include information on risk communication.

DISCUSSION


50

Preparation for shared decision-making

l Evidence suggests that many older people with complex health and care needs, particularly those withlower health literacy or conditions, such as depression, are likely to need support to take part inconsultations involving SDM.

l The evidence indicates that PDAs for older people with complex needs are likely to be most effectivewhen used as part of a face-to-face interaction with a HCP, for example for facilitating discussionbetween the patient, family carer and HCP.

Suggestions for future research

Several potential areas for future research were identified by the review. These are listed in order ofpriority:

l How can interventions be tailored to the SDM needs of older people with complex health and careneeds and how effective are such approaches? For example, would longer consultations in primary carefacilitate SDM and improve patient outcomes?

l How can family members be involved in SDM and what is the impact of this? For example, what is theimpact of making it the default option (with consent from the older person) to involve designatedfamily members in consultations and discussions about treatment options? What models work best,what would be the uptake and how would it affect satisfaction and patient outcomes?

l What service models are most likely to support SDM? For example, does moving away from disease-related checks in primary care to a more holistic and team-based regular review increase SDM andimprove patient outcomes?

l How can health and care professionals other than doctors be involved in SDM?l What is the impact of training members of the MDT to act as decision coaches for older people with

complex health and care needs? Who should act as a coach and at what stage should coachingbe provided?

l What is happening in SDM conversations involving older people and how are PDAs being used and towhat effect? Can modes of communication, other than face to face, be effective?

l Can decision aids be developed for use with older people with multiple health and care needs? Forexample, rather than focusing on individual conditions, can SDM be used to look more generally at theoverall treatment burden for the older person and their family members?

l How can patient decisions, goals and preferences be best recorded and communicated betweendifferent team members in integrated care sites?

l What would be the impact of overt discussions about prognosis? Would knowing more about anindividual’s views about coming to the end of their life shape decisions?

l How does working in a more patient-centred way, with a focus on SDM, affect health-care providers’experience and satisfaction?



51

Acknowledgements

We would like to acknowledge the contribution of Ms Sue Davies who worked as a researcher onthis project. We would like to thank our Project Advisory Group, Dr Geoff Wong (chairperson),

Mrs Jane Hopkins, Mrs Jeanne Carlin and Ms Natalie Koussa; and PPI members Dr Paul Millac andMs Marion Crowe for their support and guidance.

Contributions of authors

Professor Frances Bunn (Professor, Health and Complex Conditions) was the principal investigator,led the study, was involved in all aspects of the review process and was the lead author of this report.

Professor Claire Goodman (Professor, Health Services Research) was a co-applicant on the grant, wasinvolved in study design, research team meetings and workshops, gave feedback between meetings andparticipated in the synthesis process and preparation of the final report.

Ms Bridget Russell (Research Assistant) assisted with project management, was involved in all aspects ofthe review process and participated in the preparation of the final report.

Professor Patricia Wilson (Professor, Primary and Community Care) was a co-applicant on the grant, wasinvolved in review processes, attended research team meetings and workshops and participated in thepreparation of the final report.

Professor Jill Manthorpe (Professor, Social Work) was a co-applicant on the grant, was involved inreview processes, attended research team meetings and workshops and participated in the preparation ofthe final report.

Dr Greta Rait (Reader, Primary Care) was a co-applicant on the grant, was involved in study design,attended workshops and meetings, provided clinical expertise and participated in the preparation of thefinal report.

Dr Isabel Hodkinson (Tower Hamlets Clinical Commissioning Group) was a co-applicant on the grant,was involved in study design, attended workshops and meetings and provided clinical expertise.

Dr Marie-Anne Durand (Assistant Professor, Health Policy and Clinical Practice) was involved in reviewprocesses, provided expertise on SDM and participated in the preparation of the final report.

Data-sharing statement

All available data are contained in Report Supplementary Material 1–4 of the report. All queries should besubmitted to the corresponding author.

Publication

Bunn F, Goodman C, Russell B, Wilson P, Manthorpe J, Rait G, Hodkinson I, Durand MA. Supporting shareddecision making for older people with multiple health and social care needs: a realist synthesis. BMCGeriatrics 2018;18:165. URL: https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-018-0853-9



53

https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-018-0853-9

References

1. Shaw S, Rosen R, Rumbold B. What is Integrated Care? Nuffield Trust. 2011. URL: www.nuffieldtrust.org.uk/sites/files/nuffield/publication/what_is_integrated_care_research_report_june11.pdf (accessed 1 July 2017).

2. Frampton S, Guastello S, Brady C, Hale M, Horowitz S, Bennett Smith S, Stone S. Patient-CenteredCare: Improvement Guide. Picker Institute. 2008. URL: www.patient-centeredcare.org (accessed on1 May 2018).

3. Jurgens FJ, Clissett P, Gladman JR, Harwood RH. Why are family carers of people with dementiadissatisfied with general hospital care? A qualitative study. BMC Geriatr 2012;12:57. https://doi.org/10.1186/1471-2318-12-57

4. Johnson B, Conway J, Edgman-Levitan S, Sodomka P, Schucter J, Ford D, Simmons L. Partneringwith Patients and Families To Design a Patient- and Family-Centered Health Care System: A Roadmapfor the Future. A Work in Progress. Bethesda, MD: Institute for Family-Centered Care and Institute forHealthcare Improvement; unpublished manuscript. 2008. p. 107.

5. Dixon-Woods M, Cavers D, Agarwal S, Annandale E, Arthur A, Harvey J, et al. Conducting acritical interpretive synthesis of the literature on access to healthcare by vulnerable groups.BMC Med Res Methodol 2006;6:35. https://doi.org/10.1186/1471-2288-6-35

6. RAND Europe. National Evaluation of the Department of Health’s Integrated Care Pilots.Cambridge: RAND Europe; 2012. URL: www.rand.org/pubs/technical_reports/TR1164.html(accessed 1 June 2017).

7. Goodman C, Drennan V, Manthorpe J, Gage H, Trivedi D, Shah D, et al. A Study of theEffectiveness of Inter-professional Working for Community Dwelling Older People: Final Report –NIHR Service Delivery and Organisation Programme, 2011. London: HMSO; 2012.

8. NHS England Care Quality Commission, Health Education England, Public Health England, TrustDevelopment Authority. Five Year Forward View. Leeds: NHS England; 2014.

9. Coulter A, Collins A. Making Shared Decision-making a Reality: No Decision About me, Without me.London: The King’s Fund; 2011.

10. Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does itmean? (or it takes at least two to tango). Soc Sci Med 1997;44:681–92. https://doi.org/10.1016/S0277-9536(96)00221-3

11. Veatch RM. Models for ethical medicine in a revolutionary age. What physician–patient roles fosterthe most ethical relationship? Hastings Cent Rep 1972;2:5–7. https://doi.org/10.2307/3560825

12. Härter M, Moumjid N, Cornuz J, Elwyn G, van der Weijden T. [Shared decision making in 2017:International accomplishments in policy, research and implementation.] Z Evid Fortbild QualGesundhwes 2017;123–4:1–5. https://doi.org/10.1016/j.zefq.2017.05.024

13. Stiggelbout AM, Pieterse AH, De Haes JC. Shared decision making: concepts, evidence, andpractice. Patient Educ Couns 2015;98:1172–9. https://doi.org/10.1016/j.pec.2015.06.022

14. Emanuel EJ, Emanuel LL. Four models of the physician–patient relationship. J Am Med Assoc1992;267:2221–26. https://doi.org/10.1001/jama.1992.03480160079038

15. Wennberg JE, Barnes BA, Zubkoff M. Professional uncertainty and the problem of supplier-induced demand. Soc Sci Med 1982;16:811–24. https://doi.org/10.1016/0277-9536(82)90234-9



55

http://www.nuffieldtrust.org.uk/sites/files/nuffield/publication/what_is_integrated_care_research_report_june11.pdf



http://www.patient-centeredcare.org

https://doi.org/10.1186/1471-2318-12-57

https://doi.org/10.1186/1471-2318-12-57

https://doi.org/10.1186/1471-2288-6-35

http://www.rand.org/pubs/technical_reports/TR1164.html

https://doi.org/10.1016/S0277-9536(96)00221-3

https://doi.org/10.1016/S0277-9536(96)00221-3

https://doi.org/10.2307/3560825

https://doi.org/10.1016/j.zefq.2017.05.024

https://doi.org/10.1016/j.pec.2015.06.022

https://doi.org/10.1001/jama.1992.03480160079038

https://doi.org/10.1016/0277-9536(82)90234-9

16. Charles C, Gafni A, Whelan T. Decision-making in the physician-patient encounter: revisiting theshared treatment decision-making model. Soc Sci Med 1999;49:651–61 https://doi.org/10.1016/S0277-9536(99)00145-8

17. Elwyn G, Frosch D, Thomson R, Joseph-Williams N, Lloyd A, Kinnersley P, et al. Shared decisionmaking: a model for clinical practice. J Gen Intern Med. 2012;27:1361–7. https://doi.org/10.1007/s11606-012-2077-6

18. Mead N, Bower P. Patient-centredness: a conceptual framework and review of the empiricalliterature. Soc Sci Med 2000;51:1087–110. https://doi.org/10.1016/S0277-9536(00)00098-8

19. Towle A, Godolphin W. Framework for teaching and learning informed shared decision making.BMJ 1999;319:766–71. https://doi.org/10.1136/bmj.319.7212.766

20. Stacey D, Légaré F, Lewis K, Barry MJ, Bennett CL, Eden KB, et al. Decision aids for peoplefacing health treatment or screening decisions. Cochrane Database Syst Rev 2017;4:CD001431.https://doi.org/10.1002/14651858.CD001431.pub5

21. Elwyn G, Edwards A, Kinnersley P. Shared decision-making in primary care: the neglected secondhalf of the consultation. Br J Gen Pract 1999;49:477–82.

22. Elwyn G, Edwards A, Kinnersley P, Grol R. Shared decision making and the concept of equipoise:the competences of involving patients in healthcare choices. Br J Gen Pract 2000;50:892–9.

23. Barry MJ, Edgman-Levitan S. Shared decision making – the pinnacle of patient-centered care.N Engl J Med 2012;366:780–1. https://doi.org/10.1056/NEJMp1109283

24. National Diabetes Support Team. Getting to Grips with the Year of Care: A Practical Guide.NHS; 2008.

25. Duquemin A. Year of Care Report of Findings from the Pilot Programme. Gateshead: Year of CarePartnerships; 2011.

26. Taylor A. Building the House of Care: How Health Economies in Leeds and Somerset areImplementing a Coordinated Approach for People with Long-term Conditions. London: TheHealth Foundation; 2015.

27. Coulter A, Kramer G, Warren T, Salisbury C. Building the House of Care for people with long-termconditions: the foundation of the House of Care framework. Br J Gen Pract 2016;66:e288–90.https://doi.org/10.3399/bjgp16X684745

28. Mathers N, Paynton D. Rhetoric and reality in person-centred care: introducing the House of Careframework. Br J Gen Pract 2016;66:12–13. https://doi.org/10.3399/bjgp16X683077

29. Skills for Care, Skills for Health. Person-centred Approaches: Empowering People in their Lives andCommunities to Enable an Upgrade in Prevention, Wellbeing, Health, Care and Support. Leeds:Skills for Care, Skills for Health; 2017.

30. Royal College of General Practitioners. Collaborative Care and Support Planning: Ready to be aReality. London: Royal College of General Practitioners; 2014.

31. Glenpark Medical Practice. The Glenpark Story: Implementing Care and Support Planning forPeople with Long Term Conditions. Gateshead: Year of Care Partnerships; 2016.

32. Hannan R, Thompson R, Worthington A, Rooney P. The Triangle of Care. Carers Included: AGuide to Best Practice for Dementia Care. London: Carers Trust; 2013. URL: https://professionals.carers.org/sites/default/files/the_triangle_of_care_carers_included_best_practice_in_dementia_care_-_final.pdf (accessed July 2018).

33. Year of Care Partnerships. The Year of Care Partnership Programme: Working Together for BetterHealthcare and Self Care. Tyneside; 2014.

REFERENCES


56

https://doi.org/10.1016/S0277-9536(99)00145-8

https://doi.org/10.1016/S0277-9536(99)00145-8

https://doi.org/10.1007/s11606-012-2077-6

https://doi.org/10.1007/s11606-012-2077-6

https://doi.org/10.1016/S0277-9536(00)00098-8

https://doi.org/10.1136/bmj.319.7212.766

https://doi.org/10.1002/14651858.CD001431.pub5

https://doi.org/10.1056/NEJMp1109283

https://doi.org/10.3399/bjgp16X684745

https://doi.org/10.3399/bjgp16X683077

https://professionals.carers.org/sites/default/files/the_triangle_of_care_carers_included_best_practice_in_dementia_care_-_final.pdf



34. Jamieson M, Grealish L, Brown J-A, Draper B. Carers: The navigators of the maze of care forpeople with dementia – a qualitative study. Dementia. 2014;15:1112–23.

35. Guthrie B, Saultz JW, Freeman GK, Haggerty JL. Continuity of care matters. BMJ 2008;337:a867.https://doi.org/10.1136/bmj.a867

36. Sansoni J, Grootemaat P, Seraji M, Blanchard M, Snoek M. Targeting Integrated Care to thoseMost Likely to Need Frequent Health Care: A Review of Social and Clinical Risk Factors.Woollongong, NSW: Centre for Health Service Development, Australian Health Services ResearchInstitute, University of Wollongong; 2015.

37. Sinclair AJ, Hillson R, Bayer AJ, National Expert Working Group. Diabetes and dementia in olderpeople: a Best Clinical Practice Statement by a multidisciplinary National Expert Working Group.Diabet Med 2014;31:1024–31. https://doi.org/10.1111/dme.12467

38. Sinclair A, Morley JE, Rodriguez-Mañas L, Paolisso G, Bayer T, Zeyfang A, et al. Diabetes mellitusin older people: position statement on behalf of the International Association of Gerontologyand Geriatrics (IAGG), the European Diabetes Working Party for Older People (EDWPOP),and the International Task Force of Experts in Diabetes. J Am Med Dir Assoc 2012;13:497–502.https://doi.org/10.1016/j.jamda.2012.04.012

39. Leppin AL, Montori VM, Gionfriddo MR. Minimally disruptive medicine: a pragmaticallycomprehensive model for delivering care to patients with multiple chronic conditions. Healthcare2015;3:50–63. https://doi.org/10.3390/healthcare3010050

40. Demain S, Gonçalves AC, Areia C, Oliveira R, Marcos AJ, Marques A, et al. Living with, managingand minimising treatment burden in long term conditions: a systematic review of qualitativeresearch. PLOS ONE 2015;10:e0125457. https://doi.org/10.1371/journal.pone.0125457

41. May C, Montori VM, Mair FS. We need minimally disruptive medicine. BMJ 2009;339:b2803.https://doi.org/10.1136/bmj.b2803

42. Ridgeway JL, Egginton JS, Tiedje K, Linzer M, Boehm D, Poplau S, et al. Factors that lessen theburden of treatment in complex patients with chronic conditions: a qualitative study. PatientPrefer Adherence 2014;8:339–51. https://doi.org/10.2147/PPA.S58014

43. Department of Health and Social Care. Integrated Care: Our Shared Commitment. London:Department of Health and Social Care; 2013.

44. NHS England. Next Steps on the NHS Five Year Forward View. Leeds: NHS England; 2017.URL: www.england.nhs.uk/publication/next-steps-on-the-nhs-five-year-forward-view/ (accessed20 November 2017).

45. Charles A. Developing Accountable Care Systems: Lessons from Canterbury, New Zealand.London: The King’s Fund; 2017. URL: www.kingsfund.org.uk/sites/default/files/2017-08/Developing_ACSs_final_digital_0.pdf (accessed 17 May 2018).

46. Ham C, Heenan D, Longley M, Steel DR. Integrated Care in Northern Ireland, Scotland and Wales:Lessons for England. London: The King’s Fund; 2013. URL: www.kingsfund.org.uk/sites/default/files/field/field_publication_file/integrated-care-in-northern-ireland-scotland-and-wales-kingsfund-jul13.pdf(accessed 17 May 2018).

47. Ham C. Next steps on the NHS five year forward view. BMJ 2017;357:j1678. https://doi.org/10.1136/bmj.j1678

48. Welsh Government. A Framework for Delivering Integrated Health and Social Care for OlderPeople with Complex Needs. Cardiff: Welsh Government; 2014.

49. Scottish Government. Health and Social Care Delivery Plan. Scottish Government; 2016.URL: www.gov.scot/Resource/0051/00511950.pdf (accessed 20 November 2017).



57

https://doi.org/10.1136/bmj.a867

https://doi.org/10.1111/dme.12467

https://doi.org/10.1016/j.jamda.2012.04.012

https://doi.org/10.3390/healthcare3010050

https://doi.org/10.1371/journal.pone.0125457

https://doi.org/10.1136/bmj.b2803

https://doi.org/10.2147/PPA.S58014

https://www.england.nhs.uk/publication/next-steps-on-the-nhs-five-year-forward-view/

https://www.kingsfund.org.uk/sites/default/files/2017-08/Developing_ACSs_final_digital_0.pdf

https://www.kingsfund.org.uk/sites/default/files/2017-08/Developing_ACSs_final_digital_0.pdf

https://www.kingsfund.org.uk/sites/default/files/field/field_publication_file/integrated-care-in-northern-ireland-scotland-and-wales-kingsfund-jul13.pdf

https://www.kingsfund.org.uk/sites/default/files/field/field_publication_file/integrated-care-in-northern-ireland-scotland-and-wales-kingsfund-jul13.pdf

https://doi.org/10.1136/bmj.j1678


http://www.gov.scot/Resource/0051/00511950.pdf

50. Goodwin N, Dixon A, Anderson G, Wodchis W. Providing Integrated Care for Older People withComplex Needs: Lessons from seven international case studies. London: The King’s Fund; 2014.

51. Eaton S, Oliver L, Roberts S. House of care approach for patients with long term conditions worksat the local level. BMJ 2013;347:f7359. https://doi.org/10.1136/bmj.f7359

52. Coulter A, Roberts S, Dixon A. Delivering Better Services for People with Long-term Conditions:Building the House of Care. London: The King’s Fund; 2013.

53. Goodwin N, Smith J, Davies A, Perry C, Rosen R, Dixon A, et al. Integrated Care for Patients andPopulations: Improving Outcomes by Working Together: A Report to the Department of Healthand the NHS Future Forum. London: The King’s Fund and Nuffield Trust; 2012.

54. National Voices. Six Principles for Engaging People and Communities. National Voices; 2016.URL: www.nationalvoices.org.uk/publications/our-publications/six-principles-engaging-people-and-communities (accessed 3 August 2017).

55. NHS England. Integrated Primary and Acute Care Systems (PACS) – Describing the Care Modeland the Business Model. Leeds: NHS England; 2016.

56. NHS England. The Multi-specialty Community Provider (MCP) Emerging Care Model and ContractFramework. Leeds: NHS England; 2016.

57. Banerjee S. Multimorbidity – older adults need health care that can count past one. Lancet2015;385:587–9. https://doi.org/10.1016/S0140-6736(14)61596-8

58. Bunn F, Burn A, Goodman C, Robinson L, Rait G, Norton S, et al. Comorbidity and dementia: amixed method study on improving health care for people with dementia (CoDem). Health ServDeliv Res 2016;4(8).

59. Gagnon LM, Patten SB. Major depression and its association with long-term medical conditions.Can J Psychiatry 2002;47:149–52. https://doi.org/10.1177/070674370204700204

60. Freeman GK, Woloshynowych M, Baker R, Boulton M, Guthrie B, Car J, et al. Continuity of Care2006: What Have we Learned Since 2000 and What are Policy Imperatives Now? NationalCo-ordinating Centre for NHS Service Delivery and Organisation (NCCSDO); 2007. URL: www.netscc.ac.uk/hsdr/files/project/SDO_FR_08-1609-138_V01.pdf (accessed 20 November 2017).

61. Bunn F, Burn AM, Goodman C, Rait G, Norton S, Robinson L, et al. Comorbidity and dementia:a scoping review of the literature. BMC Med 2014;12:192. https://doi.org/10.1186/s12916-014-0192-4

62. Robinson L, Dickinson C, Rousseau N, Beyer F, Clark A, Hughes J, et al. A systematic review ofthe effectiveness of advance care planning interventions for people with cognitive impairmentand dementia. Age Ageing 2012;41:263–9. https://doi.org/10.1093/ageing/afr148

63. Naik AD, Martin LA, Moye J, Karel MJ. Health values and treatment goals of older, multimorbidadults facing life-threatening illness. J Am Geriatr Soc 2016;64:625–31. https://doi.org/10.1111/jgs.14027

64. Heaton J, Corden A, Parker G. ‘Continuity of care’: a critical interpretive synthesis of how theconcept was elaborated by a national research programme. Int J Integr Care 2012;12:e12.https://doi.org/10.5334/ijic.794

65. Parker G, Corden A, Heaton J. Synthesis and Conceptual Analysis of the SDO Programme’sResearch on Continuity of Care. Report for the National Institute for Health Research ServiceDelivery and Organisation programme. York: Social Policy Research Unit, University of York; 2009.

66. Coulter A, Entwistle VA, Eccles A, Ryan S, Shepperd S, Perera R. Personalised care planning foradults with chronic or long-term health conditions. Cochrane Database Syst Rev 2015;3:CD010523.https://doi.org/10.1002/14651858.CD010523.pub2

REFERENCES


58

https://doi.org/10.1136/bmj.f7359

https://www.nationalvoices.org.uk/publications/our-publications/six-principles-engaging-people-and-communities

https://www.nationalvoices.org.uk/publications/our-publications/six-principles-engaging-people-and-communities

https://doi.org/10.1016/S0140-6736(14)61596-8

https://doi.org/10.1177/070674370204700204

http://www.netscc.ac.uk/hsdr/files/project/SDO_FR_08-1609-138_V01.pdf

http://www.netscc.ac.uk/hsdr/files/project/SDO_FR_08-1609-138_V01.pdf

https://doi.org/10.1186/s12916-014-0192-4

https://doi.org/10.1186/s12916-014-0192-4

https://doi.org/10.1093/ageing/afr148

https://doi.org/10.1111/jgs.14027


https://doi.org/10.5334/ijic.794


67. Sinnott C, Mc Hugh S, Browne J, Bradley C. GPs’ perspectives on the management of patients withmultimorbidity: systematic review and synthesis of qualitative research. BMJ Open 2013;3:e003610.https://doi.org/10.1136/bmjopen-2013-003610

68. Shay LA, Lafata JE. Where is the evidence? A systematic review of shared decision making and patientoutcomes. Med Decis Making 2015;35:114–31. https://doi.org/10.1177/0272989X14551638

69. Durand MA, Carpenter L, Dolan H, Bravo P, Mann M, Bunn F, Elwyn G. Do interventionsdesigned to support shared decision-making reduce health inequalities? A systematic review andmeta-analysis. PLOS ONE 2014;9:e94670. https://doi.org/10.1371/journal.pone.0094670

70. Bunn F, Goodman C, Manthorpe J, Durand MA, Hodkinson I, Rait G, et al. Supporting shareddecision-making for older people with multiple health and social care needs: a protocol for arealist synthesis to inform integrated care models. BMJ Open 2017;7:e014026. https://doi.org/10.1136/bmjopen-2016-014026

71. Rycroft-Malone J, McCormack B, Hutchinson AM, DeCorby K, Bucknall TK, Kent B, et al. Realistsynthesis: illustrating the method for implementation research. Implement Sci 2012;7:33.https://doi.org/10.1186/1748-5908-7-33

72. Wong G, Greenhalgh T, Westhorp G, Buckingham J, Pawson R. RAMESES publication standards:realist syntheses. BMC Med 2013;11:21. https://doi.org/10.1186/1741-7015-11-21

73. Bunn F, Goodman C, Wilson P, Manthorpe J, Rait G, Hodgkinson I, Millac P, et al. Supportingshared decision making for older people with multiple health and social care needs: a realistsynthesis to inform emerging models of health and care. PROSPERO database. York: Centre forReviews and Dissemination University of York; 2016.

74. Pawson R. Evidence-based Policy: A Realist Perspective. London: Sage Publications Ltd; 2006.https://doi.org/10.4135/9781849209120

75. Pawson R, Greenhalgh T, Harvey G, Walshe KR. Realist Synthesis: An Introduction. Manchester:Economic and Social Research Council (ESRC) Research Methods Programme, University ofManchester; 2004.

76. Pawson R, Greenhalgh J, Brennan C, Glidewell L. Do reviews of healthcare interventions teach ushow to improve healthcare systems? The depth ontology of demand management. Soc Sci Med2014;114:129–37. https://doi.org/10.1016/j.socscimed.2014.05.032

77. Kastner M, Estey E, Perrier L, Graham ID, Grimshaw J, Straus SE, et al. Understanding therelationship between the perceived characteristics of clinical practice guidelines and their uptake:protocol for a realist review. Implement Sci 2011;6:69. https://doi.org/10.1186/1748-5908-6-69

78. Jagosh J, Macaulay AC, Pluye P, Salsberg J, Bush PL, Henderson J, et al. Uncovering the benefits ofparticipatory research: implications of a realist review for health research and practice. Milbank Q2012;90:311–46. https://doi.org/10.1111/j.1468-0009.2012.00665.x

79. Pawson R. The Science of Evaluation: A Realist Manifesto. London: Sage Publications Ltd; 2013.https://doi.org/10.4135/9781473913820

80. Astbury B, Leeuw FL. Unpacking black boxes: mechanisms and theory building in evaluation.Am J Eval 2010;31:363–81. https://doi.org/10.1177/1098214010371972

81. Pawson R, Tilley N. Realistic Evaluation. London: Sage Publications Ltd; 1997.

82. Wong G, Greenhalgh T, Westhorp G, Pawson R. Development of methodological guidance,publication standards and training materials for realist and meta-narrative reviews: the RAMESES(Realist And Meta-narrative Evidence Syntheses: Evolving Standards) project. Health Serv Deliv Res2014;2:(30).



59

https://doi.org/10.1136/bmjopen-2013-003610

https://doi.org/10.1177/0272989X14551638

https://doi.org/10.1371/journal.pone.0094670



https://doi.org/10.1186/1748-5908-7-33

https://doi.org/10.1186/1741-7015-11-21

https://doi.org/10.4135/9781849209120

https://doi.org/10.1016/j.socscimed.2014.05.032

https://doi.org/10.1186/1748-5908-6-69

https://doi.org/10.1111/j.1468-0009.2012.00665.x

https://doi.org/10.4135/9781473913820

https://doi.org/10.1177/1098214010371972

83. Agoritsas T, Heen AF, Brandt L, Alonso-Coello P, Kristiansen A, Akl EA, et al. Decision aids thatreally promote shared decision making: the pace quickens. BMJ 2015;350:g7624. https://doi.org/10.1136/bmj.g7624

84. Légaré F, Stacey D, Gagnon S, Dunn S, Pluye P, Frosch D, et al. Validating a conceptual model foran inter-professional approach to shared decision making: a mixed methods study. J Eval Clin Pract2011;17:554–64. https://doi.org/10.1111/j.1365-2753.2010.01515.x

85. Institute of Medicine (US) Committee on Quality of Health Care in America. Crossing the Quality Chasm:A New Health System for the 21st Century. Washington, DC: National Academic Press; 2001.

86. McCormack B, McCane T. Person-Centred Practice in Nursing and Health Care: Theory andPractice. 2nd edn. Oxford: Wiley-Blackwell; 2016.

87. D’Amour D, Ferrada-Videla M, San Martin Rodriguez L, Beaulieu MD. The conceptual basis forinterprofessional collaboration: core concepts and theoretical frameworks. J Interprof Care2005;19(Suppl. 1):116–31. https://doi.org/10.1080/13561820500082529

88. Légaré F, Stacey D, Graham ID, Elwyn G, Pluye P, Gagnon MP, et al. Advancing theories, modelsand measurement for an interprofessional approach to shared decision making in primary care:a study protocol. BMC Health Serv Res 2008;8:2. https://doi.org/10.1186/1472-6963-8-2

89. Gittell JH, Suchmann AL. An Overview of Relational Coordination Adapted from ‘New Directions forRelational Coordination Theory’. In Cameron K, Spreitzer G, editors. Oxford Handbook of PositiveOrganizational Scholarship. Oxford: Oxford University Press; 2011. pp. 1–3.

90. Carman KL, Dardess P, Maurer M, Sofaer S, Adams K, Bechtel C, Sweeney J. Patient and familyengagement: a framework for understanding the elements and developing interventions andpolicies. Health Aff 2013;32:223–31. https://doi.org/10.1377/hlthaff.2012.1133

91. Hibbard JH, Stockard J, Mahoney ER, Tusler M. Development of the Patient Activation Measure(PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res2004;39:1005–26. https://doi.org/10.1111/j.1475-6773.2004.00269.x

92. Hibbard JH. Patient activation and the use of information to support informed health decisions.Patient Educ Couns 2017;100:5–7. https://doi.org/10.1016/j.pec.2016.07.006

93. Légaré F, Ratté S, Gravel K, Graham ID. Barriers and facilitators to implementing shareddecision-making in clinical practice: update of a systematic review of health professionals’perceptions. Patient Educ Couns 2008;73:526–35. https://doi.org/10.1016/j.pec.2008.07.018

94. Légaré F, Turcotte S, Stacey D, Ratté S, Kryworuchko J, Graham ID. Patients’ perceptions of sharingin decisions: a systematic review of interventions to enhance shared decision making in routineclinical practice. Patient 2012;5:1–19. https://doi.org/10.2165/11592180-000000000-00000

95. Angel S, Frederiksen KN. Challenges in achieving patient participation: a review of howpatient participation is addressed in empirical studies. Int J Nurs Stud 2015;52:1525–38.https://doi.org/10.1016/j.ijnurstu.2015.04.008

96. Clyne B, Bradley M, Hughes C, Fahey T, Lapane KL. Electronic prescribing and other forms oftechnology to reduce inappropriate medication use and polypharmacy in older people: a reviewof current evidence (provisional abstract). Clin Geriatr Med 2012;28:301–22. https://doi.org/10.1016/j.cger.2012.01.009

97. Duncan E, Best C, Hagen S. Shared decision making interventions for people with mental healthconditions. Cochrane Database Syst Rev 2010;1:CD007297. https://doi.org/10.1002/14651858.CD007297.pub2

98. Holm AL, Berland AK, Severinsson E. Older patients’ involvement in shared decision-making –

a systematic review. Open J Nurs 2016;6:170–85. https://doi.org/10.4236/ojn.2016.63018

REFERENCES


60

https://doi.org/10.1136/bmj.g7624


https://doi.org/10.1111/j.1365-2753.2010.01515.x

https://doi.org/10.1080/13561820500082529

https://doi.org/10.1186/1472-6963-8-2

https://doi.org/10.1377/hlthaff.2012.1133

https://doi.org/10.1111/j.1475-6773.2004.00269.x



https://doi.org/10.2165/11592180-000000000-00000

https://doi.org/10.1016/j.ijnurstu.2015.04.008

https://doi.org/10.1016/j.cger.2012.01.009

https://doi.org/10.1016/j.cger.2012.01.009



https://doi.org/10.4236/ojn.2016.63018

99. Hyde C, Dunn KM, Higginbottom A, Chew-Graham CA. Process and impact of patientinvolvement in a systematic review of shared decision-making in primary care consultations.Health Expect 2017;20:298–308.

100. Joosten EAG, DeFuentes-Merillas L, de Weert GH, Sensky T, van der Staak CPF, de Jong CAJ.Systematic review of the effects of shared decision-making on patient satisfaction, treatmentadherence and health status. Psychother Psychosom 2008;77:219–26. https://doi.org/10.1159/000126073

101. Kogan AC, Wilber K, Mosqueda L. Person-centered care for older adults with chronic conditionsand functional impairment: a systematic literature review. J Am Geriatr Soc 2016;64:e1–7.https://doi.org/10.1111/jgs.13873

102. Mavis B, Holmes Rovner M, Jorgenson S, Coffey J, Anand N, Bulica E, et al. Patient participationin clinical encounters: a systematic review to identify self-report measures. Health Expect2015;18:1827–43. https://doi.org/10.1111/hex.12186

103. Austin CA, Mohottige D, Sudore RL, Smith AK, Hanson LC. Tools to promote shared decisionmaking in serious illness: a systematic review. JAMA Intern Med 2015;175:1213–21. https://doi.org/10.1001/jamainternmed.2015.1679

104. Bélanger E, Rodríguez C, Groleau D. Shared decision-making in palliative care: a systematicmixed studies review using narrative synthesis. Palliat Med 2011;25:242–61. https://doi.org/10.1177/0269216310389348

105. Bratzke LC, Muehrer RJ, Kehl KA, Lee KS, Ward EC, Kwekkeboom KL. Self-management prioritysetting and decision-making in adults with multimorbidity: a narrative review of literature. Int JNurs Stud 2015;52:744–55. https://doi.org/10.1016/j.ijnurstu.2014.10.010

106. Clayman ML, Bylund CL, Chewning B, Makoul G. The impact of patient participation in healthdecisions within medical encounters: a systematic review. Med Decis Making 2016;36:427–52.https://doi.org/10.1177/0272989X15613530

107. Couët N, Desroches S, Robitaille H, Vaillancourt H, Leblanc A, Turcotte S, et al. Assessments ofthe extent to which health-care providers involve patients in decision making: a systematic reviewof studies using the OPTION instrument. Health Expect 2015;18:542–61. https://doi.org/10.1111/hex.12054

108. Coylewright M, Branda M, Inselman JW, Shah N, Hess E, LeBlanc A, et al. Impact ofsociodemographic patient characteristics on the efficacy of decision AIDS: a patient-levelmeta-analysis of 7 randomized trials. Circ Cardiovasc Qual Outcomes 2014;7:360–7. https://doi.org/10.1161/HCQ.0000000000000006

109. Doyle C, Lennox L, Bell D. A systematic review of evidence on the links between patient experienceand clinical safety and effectiveness. BMJ Open 2013;3:e001570. https://doi.org/10.1136/bmjopen-2012-001570

110. Dwamena F, Holmes-Rovner M, Gaulden CM, Jorgenson S, Sadigh G, Sikorskii A, et al.Interventions for providers to promote a patient-centred approach in clinical consultations.Cochrane Database Syst Rev 2012;12:CD003267. https://doi.org/10.1002/14651858.CD003267.pub2

111. Dy SM, Purnell TS. Key concepts relevant to quality of complex and shared decision-making inhealth care: a literature review. Soc Sci Med 2012;74:582–7. https://doi.org/10.1016/j.socscimed.2011.11.015

112. Edwards M, Davies M, Edwards A. What are the external influences on information exchangeand shared decision-making in healthcare consultations: a meta-synthesis of the literature.Patient Educ Couns 2009;75:37–52. https://doi.org/10.1016/j.pec.2008.09.025



61

https://doi.org/10.1159/000126073

https://doi.org/10.1159/000126073


https://doi.org/10.1111/hex.12186

https://doi.org/10.1001/jamainternmed.2015.1679


https://doi.org/10.1177/0269216310389348

https://doi.org/10.1177/0269216310389348

https://doi.org/10.1016/j.ijnurstu.2014.10.010

https://doi.org/10.1177/0272989X15613530



https://doi.org/10.1161/HCQ.0000000000000006

https://doi.org/10.1161/HCQ.0000000000000006








113. Elliott J, McNeil H, Ashbourne J, Huson K, Boscart V, Stolee P. Engaging older adults in healthcare decision-making: a realist synthesis. Patient 2016;9:383–93. https://doi.org/10.1007/s40271-016-0168-x

114. Elwyn G, Scholl I, Tietbohl C, Mann M, Edwards AG, Clay C, et al. ‘Many miles to go …’: asystematic review of the implementation of patient decision support interventions into routineclinical practice. BMC Med Inform Decis Mak 2013;13(Suppl. 2):14. https://doi.org/10.1186/1472-6947-13-S2-S14

115. Fagerlin A, Pignone M, Abhyankar P, Col N, Feldman-Stewart D, Gavaruzzi T, et al. Clarifyingvalues: an updated review. BMC Med Inform Decis Mak 2013;13(Suppl. 2):8. https://doi.org/10.1186/1472-6947-13-S2-S8

116. Joseph-Williams N, Elwyn G, Edwards A. Knowledge is not power for patients: a systematicreview and thematic synthesis of patient-reported barriers and facilitators to shared decisionmaking. Patient Educ Couns. 2014;94:291–309. https://doi.org/10.1016/j.pec.2013.10.031

117. Land V, Parry R, Seymour J. Communication practices that encourage and constrain shareddecision making in health-care encounters: systematic review of conversation analytic research.Health Expect 2017;20:1228–47. https://doi.org/10.1111/hex.12557

118. Légaré F, Stacey D, Turcotte S, Cossi MJ, Kryworuchko J, Graham ID, et al. Interventions forimproving the adoption of shared decision making by healthcare professionals. CochraneDatabase Syst Rev 2014;9:CD006732. https://doi.org/10.1002/14651858.CD006732.pub3

119. Miller LM, Whitlatch CJ, Lyons KS. Shared decision-making in dementia: a review of patient andfamily carer involvement. Dementia 2014;15:1141–57. https://doi.org/10.1177/1471301214555542

120. Stacey D, Kryworuchko J, Belkora J, Davison BJ, Durand MA, Eden KB, et al. Coaching andguidance with patient decision aids: a review of theoretical and empirical evidence. BMC MedInform Decis Mak 2013;13(Suppl. 2):11. https://doi.org/10.1186/1472-6947-13-S2-S11

121. van Weert JC, van Munster BC, Sanders R, Spijker R, Hooft L, Jansen J. Decision aids to help olderpeople make health decisions: a systematic review and meta-analysis. BMC Med Inform Decis Mak2016;16:45. https://doi.org/10.1186/s12911-016-0281-8

122. Gravel K, Légaré F, Graham ID. Barriers and facilitators to implementing shared decision-makingin clinical practice: a systematic review of health professionals’ perceptions. Implement Sci2006;1:16.

123. O’Connor AM, Bennett C, Stacey D, Barry MJ, Col NF, Eden KB, et al. Do patient decision aidsmeet effectiveness criteria of the international patient decision aid standards collaboration?A systematic review and meta-analysis. Med Decis Mak 2007;27:554–74.

124. Thompson-Leduc P, Clayman ML, Turcotte S, Légaré F. Shared decision-making behaviours inhealth professionals: a systematic review of studies based on the Theory of Planned Behaviour.Health Expect 2015;18:754–774. https://doi.org/10.1111/hex.12176

125. Fraccaro P, Fraccaro P, Arguello Casteleiro M, Buchan I. Adoption of clinical decision support inmultimorbidity: a systematic review. JMIR Med Informat 2015;3:e4. https://doi.org/10.2196/medinform.3503

126. Hinsliff-Smith K, Feakes R, Whitworth G, Seymour J, Moghaddam N, Dening T, Cox K. What do weknow about the application of the Mental Capacity Act (2005) in healthcare practice regardingdecision-making for frail and older people? A systematic literature review. Health Soc CareCommunity 2017;25:295–308.

127. Academy of Medical Royal Colleges. Choosing Wisely. London: Academy of Medical RoyalColleges; 2015.

REFERENCES


62

https://doi.org/10.1007/s40271-016-0168-x

https://doi.org/10.1007/s40271-016-0168-x

https://doi.org/10.1186/1472-6947-13-S2-S14

https://doi.org/10.1186/1472-6947-13-S2-S14

https://doi.org/10.1186/1472-6947-13-S2-S8

https://doi.org/10.1186/1472-6947-13-S2-S8




https://doi.org/10.1177/1471301214555542

https://doi.org/10.1186/1472-6947-13-S2-S11

https://doi.org/10.1186/s12911-016-0281-8


https://doi.org/10.2196/medinform.3503

https://doi.org/10.2196/medinform.3503

128. Edwards A, Elwyn G, Hood K, Robling M, Atwell C, Holmes-Rovner M, et al. The development ofCOMRADE – a patient-based outcome measure to evaluate the effectiveness of risk communicationand treatment decision making in consultations. Patient Educ Couns 2003;50:311–22. https://doi.org/10.1016/S0738-3991(03)00055-7

129. Edwards A, Elwyn G, Hood K, Atwell C, Robling, M, Houston H, et al. Patient-based outcomeresults from a cluster randomized trial of shared decision making skill development and use of riskcommunication aids in general practice. Fam Pract 2004;21:347–54. https://doi.org/10.1093/fampra/cmh402

130. Elwyn G, Edwards A, Gwyn R, Grol R. Towards a feasible model for shared decision-making:focus group study with general practice registrars. BMJ 1999;319:753 https://doi.org/10.1136/bmj.319.7212.753

131. Elwyn G. Idealistic, impractical, impossible? Shared decision-making in the real world. Br J GenPract 2006;56:403–4

132. Elwyn G, Loyd A, May C, van der Wiejden T, Stiggelbout A, Edwards A, et al. Collaborativedeliberation: a model for patient care. Patient Educa Couns 2014;97:158–164. https://doi.org/10.1016/j.pec.2014.07.027

133. Fried TR, Tinetti ME, Iannone L, O’Leary JR, Towle V, Van Ness PH. Health outcome prioritizationas a tool for decision making among older persons with multiple chronic conditions. Arch InternMed 2011;171:1854–6. https://doi.org/10.1001/archinternmed.2011.424

134. Légaré F, Politi MC, Drolet R, Desroches S, Stacey D, Bekker H, the SDM-CPD team. Training healthprofessionals in shared decision-making: an international environmental scan. Patient Educ Couns2012;88:159–169. https://doi.org/10.1016/j.pec.2012.01.002

135. Légaré F, Moumjid-Ferdjaoui N, Drolet R, Stacey D, Harter M, Bastian M et al. Core competenciesfor shared decision making training programs: insights from an international, interdisciplinaryworking group. J Contin Educ Health Prof 2013;33:267–73. https://doi.org/10.1002/chp.21197

136. Légaré F, O’Connor A, Graham I, Wells G, Tremblay S. Impact of the Ottawa Decision SupportFramework on the agreement and the difference between patients’ and physicians’ decisionalconflict. Med Decis Making 2006;26:373–390 https://doi.org/10.1177/0272989X06290492

137. Légaré F, Stacey D, Briére N, Robitaille H, Lord MC, Desroches S, Drolet R. An interprofessionalapproach to shared decision making: an exploratory case study with family caregivers of one IPhome care team. BMC Geriatr 2014;14:83. https://doi.org/10.1186/1471-2318-14-83

138. Leng G. Shared Decision Making Collaborative: A Consensus Statement. London: NationalInstitute for Health and Care Excellence; 2015. URL: www.nice.org.uk/Media/Default/About/what-we-do/SDM-consensus-statement.pdf (accessed 13 July 2018).

139. May CR, Eton DT, Boehmer K, Gallacher K, Hunt K, MacDonald S, et al. Rethinking the patient:using Burden of Treatment Theory to understand the changing dynamics of illness. BMC HealthServ Res 2014;14:281. https://doi.org/10.1186/1472-6963-14-281

140. Muth C, van den Akker A, Blom JW, Mallen CD, Rochon J, Schellevis FG, et al. The Ariadneprinciples: how to handle multimorbidity in primary care consultations. BMC Med 2014;12:223.https://doi.org/10.1186/s12916-014-0223-1

141. Robben SHM, Heinen MM, Perry M, van Achterberg T, Olde Rikkert MG, Schers HJ, et al. Firstexperiences with a two-step method for discussing goals with community-dwelling frail olderpeople. Health Expect 2015;18:1559–66. https://doi.org/10.1111/hex.12145

142. Schulman-Green DJ, Naik AD, Bradley EH, McCorkle R, Bogardus ST. Goal setting as a shareddecision-making strategy among clinicians and their older patients. Patient Educ Couns2006;63:145–51.



63

https://doi.org/10.1016/S0738-3991(03)00055-7

https://doi.org/10.1016/S0738-3991(03)00055-7

https://doi.org/10.1093/fampra/cmh402


https://doi.org/10.1136/bmj.319.7212.753

https://doi.org/10.1136/bmj.319.7212.753



https://doi.org/10.1001/archinternmed.2011.424


https://doi.org/10.1002/chp.21197

https://doi.org/10.1177/0272989X06290492

https://doi.org/10.1186/1471-2318-14-83

http://www.nice.org.uk/Media/Default/About/what-we-do/SDM-consensus-statement.pdf

http://www.nice.org.uk/Media/Default/About/what-we-do/SDM-consensus-statement.pdf

https://doi.org/10.1186/1472-6963-14-281

https://doi.org/10.1186/s12916-014-0223-1


143. Jansen J, Naganathan V, Carter SM, McLachlan AJ, Nickel B, Irwig L, et al. Too much medicine inolder people? Deprescribing through shared decision making. BMJ 2016;353:i2893. https://doi.org/10.1136/bmj.i2893

144. Légaré F, Stacey D, Pouliot S, Gauvin FP, Desroches S, Kryworuchko J, et al. Interprofessionalismand shared decision-making in primary care: a stepwise approach towards a new model.J Interprof Care 2011;25:18–25. https://doi.org/10.3109/13561820.2010.490502

145. Légaré F, Hébert J, Goh L, Lewis KB, Leiva Portocarrero ME, Robitaille H, Stacey D. Do choosingwisely tools meet criteria for patient decision aids? A descriptive analysis of patient materials.BMJ Open 2016;6:e011918. https://doi.org/10.1136/bmjopen-2016-011918

146. Manzano A. The craft of interviewing in realist evaluation. Evaluation 2016;22:342–60.https://doi.org/10.1177/1356389016638615

147. Pearson M, Brand SL, Quinn C, Shaw J, Maguire M, Michie S, et al. Using realist review to informintervention development: methodological illustration and conceptual platform for collaborative carein offender mental health. Implement Sci 2015;10:134. https://doi.org/10.1186/s13012-015-0321-2

148. Ford JA, Wong G, Jones AP, Steel N. Access to primary care for socioeconomically disadvantagedolder people in rural areas: a realist review. BMJ Open 2016;6:e010652. https://doi.org/10.1136/bmjopen-2015-010652

149. Pawson R, Greenhalgh T, Harvey G, Walshe K. Realist review – a new method of systematic reviewdesigned for complex policy interventions. J Health Serv Res Policy 2005;10(Suppl. 1):21–34.https://doi.org/10.1258/1355819054308530

150. Pawson R. Evidence-based Policy: The Promise of ‘Realist Synthesis’. Evaluation 2002;8:340–58.URL: http://evi.sagepub.com/cgi/doi/10.1177/135638902401462448 (accessed 2 May 2014).

151. Rycroft-Malone J, Burton C, Hall B, McCormack B, Nutley S, Seddon D, Williams L. Improvingskills and care standards in the support workforce for older people: a realist review. BMJ Open2014;4:e005356. https://doi.org/10.1136/bmjopen-2014-005356

152. Wong G, Pawson R, Owen L. Policy guidance on threats to legislative interventions in public health:a realist synthesis. BMC Public Health 2011;11:222. https://doi.org/10.1186/1471-2458-11-222

153. Belkora JK, Loth MK, Chen DF, Chen JY, Volz S, Esserman LJ. Monitoring the implementation ofConsultation Planning, Recording, and Summarizing in a breast care center. Patient Educ Couns2008;73:536–43. https://doi.org/10.1016/j.pec.2008.07.037

154. Berntsen GK, Gammon D, Steinsbekk A, Salamonsen A, Foss N, Ruland C, Fønnebø V. How do wedeal with multiple goals for care within an individual patient trajectory? A document content analysisof health service research papers on goals for care. BMJ Open 2015;5:e009403. https://doi.org/10.1136/bmjopen-2015-009403

155. Blom J, den Elzen W, van Houwelingen AH, Heijmans M, Stijnen T, Van den Hout W, Gussekloo J.Effectiveness and cost-effectiveness of a proactive, goal-oriented, integrated care model in generalpractice for older people. A cluster randomised controlled trial: Integrated Systematic Care forolder People – the ISCOPE study. Age Ageing 2016;45:30–41. https://doi.org/10.1093/ageing/afv174

156. Bookey-Bassett S, Markle-Reid M, Mckey CA, Akhtar-Danesh N. Understanding interprofessionalcollaboration in the context of chronic disease management for older adults living in communities:a concept analysis. J Adv Nurs 2017;73:71–84. https://doi.org/10.1111/jan.13162

157. Bridges J, Hughes J, Farrington N, Richardson A. Cancer treatment decision-making processes forolder patients with complex needs: a qualitative study. BMJ Open 2015;5:e009674. https://doi.org/10.1136/bmjopen-2015-009674

REFERENCES


64

https://doi.org/10.1136/bmj.i2893

https://doi.org/10.1136/bmj.i2893

https://doi.org/10.3109/13561820.2010.490502


https://doi.org/10.1177/1356389016638615

https://doi.org/10.1186/s13012-015-0321-2



https://doi.org/10.1258/1355819054308530

http://evi.sagepub.com/cgi/doi/10.1177/135638902401462448


https://doi.org/10.1186/1471-2458-11-222




https://doi.org/10.1093/ageing/afv174

https://doi.org/10.1093/ageing/afv174

https://doi.org/10.1111/jan.13162



158. Bugge C, Entwistle VA, Watt IS. The significance for decision-making of information that is notexchanged by patients and health professionals during consultations. Soc Sci Med 2006;63:2065–78.https://doi.org/10.1016/j.socscimed.2006.05.010

159. Bynum JP, Barre L, Reed C, Passow H. Participation of very old adults in health care decisions.Med Decis Making 2014;34:216–30. https://doi.org/10.1177/0272989X13508008

160. Chong WW, Aslani P, Chen TF. Shared decision-making and interprofessional collaboration inmental healthcare: a qualitative study exploring perceptions of barriers and facilitators. J InterprofCare 2013;27:373–9. https://doi.org/10.3109/13561820.2013.785503

161. Chong WW, Aslani P, Chen TF. Multiple perspectives on shared decision-making and interprofessionalcollaboration in mental healthcare. J Interprof Care 2013;27:223–30. https://doi.org/10.3109/13561820.2013.767225

162. Cramm JM, Nieboer AP. The changing nature of chronic care and coproduction of care betweenprimary care professionals and patients with COPD and their informal caregivers. Int J ChronObstruct Pulmon Dis 2016;11:175–82. https://doi.org/10.2147/COPD.S94409

163. Cramm JM, Nieboer AP. In the Netherlands, rich interaction among professionals conductingdisease management led to better chronic care. Health Aff 2012;31:2493–500. https://doi.org/10.1377/hlthaff.2011.1304

164. Cramm JM, Nieboer AP. A longitudinal study to identify the influence of quality of chronic caredelivery on productive interactions between patients and (teams of) healthcare professionalswithin disease management programmes. BMJ Open 2014;4:e005914. https://doi.org/10.1136/bmjopen-2014-005914

165. Dardas AZ, Stockburger C, Boone S, An T, Calfee RP. Preferences for shared decision makingin older adult patients with orthopedic hand conditions. J Hand Surg Am 2016;41:978–87.https://doi.org/10.1016/j.jhsa.2016.07.096

166. Durand M-A, Barr PJ, Walsh T, Elwyn G. Incentivizing shared decision making in the USA – whereare we now? Healthc (Amst) 2015 Jun;3:97–101. https://doi.org/10.1016/j.hjdsi.2014.10.008

167. Elwyn G, Edwards A, Hood K, Robling M, Atwell C, Russell I, et al. Achieving involvement:process outcomes from a cluster randomized trial of shared decision making skill developmentand use of risk communication aids in general practice. Fam Pract 2004;21:337–46. https://doi.org/10.1093/fampra/cmh401

168. Farrelly S, Lester H, Rose D, Birchwood M, Marshall M, Waheed W, et al. Barriers to shareddecision making in mental health care: qualitative study of the Joint Crisis Plan for psychosis.Health Expect 2016;19:448–58. https://doi.org/10.1111/hex.12368

169. Fried TR, O’Leary J, Van Ness P, Fraenkel L. Inconsistency over time in the preferences of olderpersons with advanced illness for life-sustaining treatment. J Am Geriatr Soc 2007;55:1007–14.https://doi.org/10.1111/j.1532-5415.2007.01232.x

170. Gleason KT, Tanner EK, Boyd CM, Saczynski JS, Szanton SL. Factors associated with patientactivation in an older adult population with functional difficulties. Patient Educ Couns2016;99:1421–6. https://doi.org/10.1016/j.pec.2016.03.011

171. Grim K, Rosenberg D, Svedberg P, Schön UK. Shared decision-making in mental health care –

a user perspective on decisional needs in community-based services. Int J Qual Stud HealthWell-being 2016;11:30563. https://doi.org/10.3402/qhw.v11.30563



65


https://doi.org/10.1177/0272989X13508008

https://doi.org/10.3109/13561820.2013.785503

https://doi.org/10.3109/13561820.2013.767225

https://doi.org/10.3109/13561820.2013.767225

https://doi.org/10.2147/COPD.S94409





https://doi.org/10.1016/j.jhsa.2016.07.096

https://doi.org/10.1016/j.hjdsi.2014.10.008




https://doi.org/10.1111/j.1532-5415.2007.01232.x


https://doi.org/10.3402/qhw.v11.30563

172. Groen-van de Ven L, Smits C, Span M, Jukema J, Coppoolse K, de Lange J, et al. The challengesof shared decision making in dementia care networks [published online ahead of print9 September 2016]. Int Psychogeriatr 2016. URL: www.cambridge.org/core/journals/international-psychogeriatrics/article/challenges-of-shared-decision-making-in-dementia-care-networks/78CBFC293C95644BC6A39B2E423EF32B (accessed 17 May 2018).

173. Hacking B, Wallace L, Scott S, Kosmala-Anderson J, Belkora J, McNeill A. Testing the feasibility,acceptability and effectiveness of a ‘decision navigation’ intervention for early stage prostatecancer patients in Scotland – a randomised controlled trial. Psycho-Oncology 2013;22:1017–24.https://doi.org/10.1002/pon.3093

174. Hart JL, Pflug E, Madden V, Halpern SD. Thinking forward: future-oriented thinking amongpatients with tobacco-associated thoracic diseases and their surrogates. Am J Respir Crit CareMed 2016;193:321–9. https://doi.org/10.1164/rccm.201505-0882OC

175. Herlitz A, Munthe C, Törner M, Forsander G. The counseling, self-care, adherence approach toperson-centered care and shared decision making: moral psychology, executive autonomy, andethics in multi-dimensional care decisions. Health Commun 2016;31:964–73. https://doi.org/10.1080/10410236.2015.1025332

176. Jones JB, Bruce CA, Shah NR, Taylor WF, Stewart WF. Shared decision making: using healthinformation technology to integrate patient choice into primary care. Transl Behav Med2011;1:123–33. https://doi.org/10.1007/s13142-011-0023-5

177. Joseph-Williams N, Lloyd A, Edwards A, Stobbart L, Tomson D, Macphail S, et al. Implementingshared decision making in the NHS: lessons from the MAGIC programme. BMJ 2017;357:j1744.https://doi.org/10.1136/bmj.j1744

178. Körner M, Ehrhardt H, Steger AK. Designing an interprofessional training program for shared decisionmaking. J Interprof Care 2013;27:146–54. https://doi.org/10.3109/13561820.2012.711786

179. Kuluski K, Gill A, Naganathan G, Upshur R, Jaakkimainen RL, Wodchis WP. A qualitativedescriptive study on the alignment of care goals between older persons with multi-morbidities,their family physicians and informal caregivers. BMC Fam Pract 2013;14:133. https://doi.org/10.1186/1471-2296-14-133

180. Ladin K, Lin N, Hahn E, Zhang G, Koch-Weser S, Weiner DE. Engagement in decision-making andpatient satisfaction: a qualitative study of older patients’ perceptions of dialysis initiation andmodality decisions. Nephrol Dial Transplant 2016;8:1–8. https://doi.org/10.1093/ndt/gfw307

181. Mercer SW, O’Brien R, Fitzpatrick B, Higgins M, Guthrie B, Watt G, Wyke S. The developmentand optimisation of a primary care-based whole system complex intervention (CARE Plus) forpatients with multimorbidity living in areas of high socioeconomic deprivation. Chronic Illn2016;12:165–81. https://doi.org/10.1177/1742395316644304

182. Politi MC, Street RL. The importance of communication in collaborative decision making:facilitating shared mind and the management of uncertainty. J Eval Clin Pract 2011;17:579–84.https://doi.org/10.1111/j.1365-2753.2010.01549.x

183. Robben S, van Kempen J, Heinen M, Zuidema S, Olde Rikkert M, Schers H, Melis R. Preferencesfor receiving information among frail older adults and their informal caregivers: a qualitativestudy. Fam Pract 2012;29:742–7. https://doi.org/10.1093/fampra/cms033

184. Ruggiano N, Whiteman K, Shtompel N. ‘If I don’t like the way I feel with a certain drug, I’ll tellthem.’: older adults’ experiences with self-determination and health self-advocacy. J ApplGerontol 2016;35:401–20. https://doi.org/10.1177/0733464814527513

REFERENCES


66

http://www.cambridge.org/core/journals/international-psychogeriatrics/article/challenges-of-shared-decision-making-in-dementia-care-networks/78CBFC293C95644BC6A39B2E423EF32B



https://doi.org/10.1002/pon.3093

https://doi.org/10.1164/rccm.201505-0882OC

https://doi.org/10.1080/10410236.2015.1025332

https://doi.org/10.1080/10410236.2015.1025332

https://doi.org/10.1007/s13142-011-0023-5


https://doi.org/10.3109/13561820.2012.711786

https://doi.org/10.1186/1471-2296-14-133

https://doi.org/10.1186/1471-2296-14-133

https://doi.org/10.1093/ndt/gfw307

https://doi.org/10.1177/1742395316644304

https://doi.org/10.1111/j.1365-2753.2010.01549.x

https://doi.org/10.1093/fampra/cms033

https://doi.org/10.1177/0733464814527513

185. Sanders AR, Bensing JM, Essed MA, Magnée T, de Wit NJ, Verhaak PF. Does training generalpractitioners result in more shared decision making during consultations? Patient Educ Couns2016;100:563–74. https://doi.org/10.1016/j.pec.2016.10.002

186. Schaller S, Marinova-Schmidt V, Setzer M, Kondylakis H, Griebel L, Sedlmayr M, et al. Usefulnessof a tailored eHealth Service for informal caregivers and professionals in the dementia treatmentand care setting: the eHealthMonitor Dementia Portal. JMIR Res Protoc 2016;5:e47. https://doi.org/10.2196/resprot.4354

187. Schaller S, Marinova-Schmidt V, Gobin J, Criegee-Rieck M, Griebel L, Engel S, et al. Tailorede-Health services for the dementia care setting: a pilot study of ‘eHealthMonitor’. BMC MedInform Decis Mak 2015;15:58. https://doi.org/10.1186/s12911-015-0182-2

188. Shay LA, Lafata JE. Understanding patient perceptions of shared decision making. Patient EducCouns 2014;96:295–301. https://doi.org/10.1016/j.pec.2014.07.017

189. Sheaff R, Halliday J, Byng R, Øvretveit J, Exworthy M, Peckham S, Asthana S. Bridging thediscursive gap between lay and medical discourse in care coordination. Sociol Health Illn2017;39:1019–34. https://doi.org/10.1111/1467-9566.12553

190. Schuling J, Gebben H, Veehof LJ, Haaijer-Ruskamp FM. Deprescribing medication in very elderlypatients with multimorbidity: the view of Dutch GPs. A qualitative study. BMC Fam Pract2012;13:56. https://doi.org/10.1186/1471-2296-13-56

191. Baqir W, Hughes J, Jones T, Barrett S, Desai N, Copeland R, et al. Impact of medication review,within a shared decision-making framework, on deprescribing in people living in care homes.Eur J Hosp Pharm 2016;24:30–3. https://doi.org/10.1136/ejhpharm-2016-000900

192. van Summeren JJ, Haaijer-Ruskamp FM, Schuling J. Eliciting preferences of multimorbid elderlyadults in family practice using an outcome prioritization tool. J Am Geriatr Soc 2016;64:e143–8.https://doi.org/10.1111/jgs.14415

193. Wrede-Sach J, Voigt I, Diederichs-Egidi H, Hummers-Pradier E, Dierks ML, Junius-Walker U.Decision-making of older patients in context of the doctor–patient relationship: a typologyranging from ‘self-determined’ to ‘doctor-trusting’ patients. Int J Family Med 2013;2013:478498.https://doi.org/10.1155/2013/478498

194. Tietbohl CK, Rendle KA, Halley MC, May SG, Lin GA, Frosch DL. Implementation of patient decisionsupport interventions in primary care: the role of relational coordination. Med Decis Making2015;35:987–98. https://doi.org/10.1177/0272989X15602886

195. Zoffmann V, Harder I, Kirkevold M. A person-centered communication and reflection model:sharing decision-making in chronic care. Qual Health Res 2008;18:670–85. https://doi.org/10.1177/1049732307311008

196. Foot C, Gilburt H, Dunn P, Jabbal J, Seale B, Goodrich J, et al. People in Control of their ownHealth and Care: The State of Involvement. London: The King’s Fund; 2014.

197. National Collaborating Centre for Primary Care. Medicines Adherence: Involving Patients inDecisions about Prescribed Medicines and Supporting Adherence. London: Royal College ofGeneral Practitioners; 2009.

198. Health Foundation. The Power of People. London: The Health Foundation. URL: www.health.org.uk/node/10181 (accessed 14 July 2017).

199. Lown BA, Kryworuchko J, Bieber C, Lillie DM, Kelly C, Berger B, Loh A. Continuing professionaldevelopment for interprofessional teams supporting patients in healthcare decision making.J Interprof Care 2011;25:401–8. https://doi.org/10.3109/13561820.2011.583563



67


https://doi.org/10.2196/resprot.4354

https://doi.org/10.2196/resprot.4354

https://doi.org/10.1186/s12911-015-0182-2


https://doi.org/10.1111/1467-9566.12553

https://doi.org/10.1186/1471-2296-13-56

https://doi.org/10.1136/ejhpharm-2016-000900


https://doi.org/10.1155/2013/478498

https://doi.org/10.1177/0272989X15602886

https://doi.org/10.1177/1049732307311008

https://doi.org/10.1177/1049732307311008

http://www.health.org.uk/node/10181

http://www.health.org.uk/node/10181

https://doi.org/10.3109/13561820.2011.583563

200. Holmside Medical Group. The Holmside Story: Person Centred Primary Care. Care and SupportPlanning. Newcastle upon Tyne: Year of Care; 2014.

201. Col N, Bozzuto L, Kirkegaard P, Koelewijn-van Loon M, Majeed H, Jen Ng C, Pacheco-Huergo V.Interprofessional education about shared decision making for patients in primary care settings.J Interprof Care 2011;25:409–15. https://doi.org/10.3109/13561820.2011.619071

202. Berger Z. Navigating the unknown: shared decision-making in the face of uncertainty. J GenIntern Med 2015;30:675–8. https://doi.org/10.1007/s11606-014-3074-8

203. Barrett B, Ricco J, Wallace M, Kiefer D, Rakel D. Communicating statin evidence to supportshared decision-making. BMC Fam Pract 2016;17:41. https://doi.org/10.1186/s12875-016-0436-9

204. Eaton S, Roberts S, Turner B. Delivering person centred care in long term conditions. BMJ2015;350:h181. https://doi.org/10.1136/bmj.h181

205. Clayman ML, Gulbrandsen P, Morris MA. A patient in the clinic; a person in the world. Whyshared decision making needs to center on the person rather than the medical encounter.Patient Educ Couns 2017;100:600–4. https://doi.org/10.1016/j.pec.2016.10.016

206. Cooper Z, Koritsanszky LA, Cauley CE, Frydman JL, Bernacki RE, Mosenthal AC, et al.Recommendations for best communication practices to facilitate goal-concordant care forseriously ill older patients with emergency surgical conditions. Ann Surg 2016;263:1–6.https://doi.org/10.1097/SLA.0000000000001491

207. Gorin M, Joffe S, Dickert N, Halpern S. Justifying clinical nudges. Hastings Cent Rep2017;47:32–8. https://doi.org/10.1002/hast.688

208. Bunn F, Goodman C, Russell B, Wilson P, Manthorpe J, Rait G, Hodkinson I, Durand MA.Supporting shared decision making for older people with multiple health and social care needs: arealist synthesis. BMC Geriatrics 2018;18:165. URL: https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-018-0853-9

209. Légaré F, Stacey D, Forest PG, Coutu MF. Moving SDM forward in Canada: milestones, publicinvolvement, and barriers that remain. Z Evid Fortbild Qual Gesundhwes 2011;105:245–53.https://doi.org/10.1016/j.zefq.2011.04.011

210. Fiscella K, Meldrum S, Franks P, Shields CG, Duberstein P, McDaniel SH, Epstein RM. Patient trust:is it related to patient-centered behavior of primary care physicians? Med Care 2004;42:1049–55.https://doi.org/10.1097/00005650-200411000-00003

211. Department of Health and Social Care. The NHS Constitution. London: Department of Health andSocial Care; 2015.

212. International Patient Decision Aid Standards What are Patient Decision Aids? URL: http://ipdas.ohri.ca/what.html (accessed 8 July 2017).

213. Bunn F, Burn AM, Robinson L, Poole M, Rait G, Brayne C, et al. Healthcare organisation anddelivery for people with dementia and comorbidity: a qualitative study exploring the viewsof patients, carers and professionals. BMJ Open 2017;7:e013067. https://doi.org/10.1136/bmjopen-2016-013067

214. Shepherd HL, Barratt A, Trevena LJ, McGeechan K, Carey K, Epstein RM, et al. Three questionsthat patients can ask to improve the quality of information physicians give about treatmentoptions: a cross-over trial. Patient Educ Couns 2011;84:379–85. https://doi.org/10.1016/j.pec.2011.07.022

215. Muscat DM, Shepherd HL, Morony S, Smith SK, Dhillon HM, Trevena L, et al. Can adults with lowliteracy understand shared decision making questions? A qualitative investigation. Patient EducCouns 2016;99:1796–802. https://doi.org/10.1016/j.pec.2016.05.008

REFERENCES


68

https://doi.org/10.3109/13561820.2011.619071

https://doi.org/10.1007/s11606-014-3074-8

https://doi.org/10.1186/s12875-016-0436-9

https://doi.org/10.1136/bmj.h181


https://doi.org/10.1097/SLA.0000000000001491

https://doi.org/10.1002/hast.688



https://doi.org/10.1016/j.zefq.2011.04.011

https://doi.org/10.1097/00005650-200411000-00003

http://ipdas.ohri.ca/what.html

http://ipdas.ohri.ca/what.html






216. Joseph-Williams N, Edwards A, Elwyn G. Power imbalance prevents shared decision making.BMJ 2014;348:g3178. https://doi.org/10.1136/bmj.g3178

217. Reeve E, Low L-F, Hilmer SN. A systematic review of the emerging definition of ‘deprescribing’with network analysis: implications for future research and clinical practice. Br J ClinPharmacol 2015;80:1254–68.

218. Reeve E, Thompson W, Farrell B. Deprescribing: a narrative review of the evidence and practicalrecommendations for recognizing opportunities and taking action. Eur J Intern Med 2017;38:3–11.https://doi.org/10.1016/j.ejim.2016.12.021

219. Oostendorp LJ, Durand MA, Lloyd A, Elwyn G. Measuring organisational readiness for patientengagement (MORE): an international online Delphi consensus study. BMC Health Serv Res2015;15:61. https://doi.org/10.1186/s12913-015-0717-3

220. Maskrey N, Gordon A. Shared understanding with patients. JAMA Intern Med 2017;177:1247–8.https://doi.org/10.1001/jamainternmed.2017.1932

221. Dalkin SM, Greenhalgh J, Jones D, Cunningham B, Lhussier M. What’s in a mechanism?Development of a key concept in realist evaluation. Implement Sci 2015;10:49. https://doi.org/10.1186/s13012-015-0237-x

222. Lacouture A, Breton E, Guichard A, Ridde V. The concept of mechanism from a realist approach:a scoping review to facilitate its operationalization in public health program evaluation.Implement Sci 2015;10:153. https://doi.org/10.1186/s13012-015-0345-7

223. Jagosh J, Pluye P, Wong G, Cargo M, Salsberg J, Bush PL, et al. Critical reflections on realistreview: insights from customizing the methodology to the needs of participatory researchassessment. Res Synth Methods 2014;5:131–41. https://doi.org/10.1002/jrsm.1099

224. Frosch DL, May SG, Rendle KA, Tietbohl C, Elwyn G. Authoritarian physicians and patients’ fear ofbeing labeled ‘difficult’ among key obstacles to shared decision making. Health Aff 2012;31:1030–8.https://doi.org/10.1377/hlthaff.2011.0576

225. Da Silva D. Helping People Share Decision Making. London: The Health Foundation; 2012.

226. Trivedi D, Goodman C, Gage H, Baron N, Scheibl F, Iliffe S, et al. The effectiveness ofinter-professional working for older people living in the community: a systematic review. HealthSoc Care Community 2013;21:113–28. https://doi.org/10.1111/j.1365-2524.2012.01067.x

227. Reilly S, Miranda-Castillo C, Malouf R, Hoe J, Toot S, Challis D, Orrell M. Case managementapproaches to home support for people with dementia. Cochrane Database Syst Rev2015;1:CD008345. https://doi.org/10.1002/14651858.CD008345.pub2

228. Huntley AL, Thomas R, Mann M, Huws D, Elwyn G, Paranjothy S, Purdy S. Is case managementeffective in reducing the risk of unplanned hospital admissions for older people? A systematicreview and meta-analysis. Fam Pract 2013;30:266–75. https://doi.org/10.1093/fampra/cms081

229. Ellis G, Whitehead MA, O’Neill D, Langhorne P, Robinson D. Comprehensive geriatric assessment forolder adults admitted to hospital. Cochrane Database Syst Rev 2011;7:CD006211 https://doi.org/10.1002/14651858.CD006211.pub2

230. Chewning B, Bylund CL, Shah B, Arora NK, Gueguen JA, Makoul G. Patient preferences forshared decisions: a systematic review. Patient Educ Couns 2012;86:9–18. https://doi.org/10.1016/j.pec.2011.02.004

231. Wolff JL, Boyd CM. A look at person-centered and family-centered care among older adults:results from a national survey. J Gen Intern Med. 2015;30:1497–504. https://doi.org/10.1007/s11606-015-3359-6



69


https://doi.org/10.1016/j.ejim.2016.12.021

https://doi.org/10.1186/s12913-015-0717-3


https://doi.org/10.1186/s13012-015-0237-x

https://doi.org/10.1186/s13012-015-0237-x

https://doi.org/10.1186/s13012-015-0345-7

https://doi.org/10.1002/jrsm.1099


https://doi.org/10.1111/j.1365-2524.2012.01067.x


https://doi.org/10.1093/fampra/cms081





https://doi.org/10.1007/s11606-015-3359-6

https://doi.org/10.1007/s11606-015-3359-6

232. Kitson A, Marshall A, Bassett K, Zeitz K. What are the core elements of patient-centred care?A narrative review and synthesis of the literature from health policy, medicine and nursing.J Adv Nurs 2013;69:4–15. https://doi.org/10.1111/j.1365-2648.2012.06064.x

233. Haggerty JL, Reid RJ, Freeman GK, Starfield BH, Adair CE, McKendry R. Continuity of care: amultidisciplinary review. BMJ 2003;327:1219–21. https://doi.org/10.1136/bmj.327.7425.1219

234. Parker G, Corden A, Heaton J. Experiences of and influences on continuity of care for serviceusers and carers: synthesis of evidence from a research programme. Health Soc Care Community2011;19:576–601. https://doi.org/10.1111/j.1365-2524.2011.01001.x

235. Ajzen I. The theory of planned behavior. Organ Behav Hum Decis Process. 1991;50:179–211.https://doi.org/10.1016/0749-5978(91)90020-T

236. Burton M, Kilner K, Wyld L, Lifford KJ, Gordon F, Allison A, et al. Information needs and decision-making preferences of older women offered a choice between surgery and primary endocrinetherapy for early breast cancer. Psycho-Oncology 2017;26:2094–100. https://doi.org/10.1002/pon.4429

237. Hargraves I, Montori VM. Decision aids, empowerment, and shared decision making. BMJ2014;349:g5811. https://doi.org/10.1136/bmj.g5811

238. Born KB, Coulter A, Han A, Ellen M, Peul W, Myres P, et al. Engaging patients and the public inChoosing Wisely. BMJ Qual Saf 2017;26:687–91. https://doi.org/10.1136/bmjqs-2017-006595

239. Wolfson D, Santa J, Slass L. Engaging physicians and consumers in conversations about treatmentoveruse and waste: a short history of the choosing wisely campaign. Acad Med 2014;89:990–5.https://doi.org/10.1097/ACM.0000000000000270

240. Weiner BJ. A theory of organizational readiness for change. Implement Sci 2009;4:67. https://doi.org/10.1186/1748-5908-4-67

241. Weiner BJ, Amick H, Lee SY. Conceptualization and measurement of organizational readiness forchange: a review of the literature in health services research and other fields. Med Care Res Rev2008;65:379–436. https://doi.org/10.1177/1077558708317802

242. Leduc C. Patient and Family Burden of Management: We Need New Knowledge. URL: www.patientlibrary.net/cgi-bin/library.cgi?page=Blog;prevref=;top=20 (accessed 17 August 2017).

243. Katz JN. Patient preferences and health disparities. JAMA 2001;286:1506–9. https://doi.org/10.1001/jama.286.12.1506

244. Briscoe S. Literature Searching for Realist Reviews. URL: https://blogs.exeter.ac.uk/realisthive/2014/06/09/literature-searching-for-realist-reviews/ (accessed 19 November 2017).

245. Booth A. Literature Searching for Realist Synthesis. URL: http://realistsearch.pbworks.com/w/page/88622804/FrontPage (accessed 19 November 2017).

246. Pawson R. Assessing the Quality of Evidence in Evidence-based Policy: Why, How and When?Manchester: Economic and Social Research Council (ESRC) Research Methods Program, Universityof Manchester; 2003. URL: file:///C:/Users/Peter/Documents/Peter work/Exercise/Pawson ESRCdocument.pdf (accessed 17 May 2018).

REFERENCES


70

https://doi.org/10.1111/j.1365-2648.2012.06064.x

https://doi.org/10.1136/bmj.327.7425.1219

https://doi.org/10.1111/j.1365-2524.2011.01001.x

https://doi.org/10.1016/0749-5978(91)90020-T




https://doi.org/10.1136/bmjqs-2017-006595

https://doi.org/10.1097/ACM.0000000000000270

https://doi.org/10.1186/1748-5908-4-67

https://doi.org/10.1186/1748-5908-4-67

https://doi.org/10.1177/1077558708317802

https://www.patientlibrary.net/cgi-bin/library.cgi?page=Blog;prevref=;top=20

https://www.patientlibrary.net/cgi-bin/library.cgi?page=Blog;prevref=;top=20

https://doi.org/10.1001/jama.286.12.1506

https://doi.org/10.1001/jama.286.12.1506

https://blogs.exeter.ac.uk/realisthive/2014/06/09/literature-searching-for-realist-reviews/

https://blogs.exeter.ac.uk/realisthive/2014/06/09/literature-searching-for-realist-reviews/

http://realistsearch.pbworks.com/w/page/88622804/FrontPage

http://realistsearch.pbworks.com/w/page/88622804/FrontPage

https://file:///C:/Users/Peter/Documents/Peter work/Exercise/Pawson ESRC document.pdf

https://file:///C:/Users/Peter/Documents/Peter work/Exercise/Pawson ESRC document.pdf

Appendix 1 Details of search strategy

Phase 1 searches (scoping searches)

TABLE 14 PubMed search for systematic reviews: phase 1 search terms SDM (searched July 2016; no date restrictions)

Search QueryNumber ofitems found

#15 Search (#14 AND #12) 168

#14 Search (“shared decision making”[Title] OR “patient participation”[Title] OR “patient decisionmaking”[Title] OR “decision support”[Title] OR “decision aid”[Title] OR SDM[Title])

5709

#13 Search (#6 AND #12) 1339

#12 Search (#7 OR #8 OR #9 OR #10 OR #11) 161,226

#11 Search “evidence synthesis” 2207

#10 Search “narrative review” 3566

#9 Search “meta synthesis” 427

#8 Search “meta analysis” 110,250

#7 Search “systematic review” 77,243

#6 Search (#1 OR #2 OR #3 OR #4 OR #5) 50,151

#5 Search “decision aid” 1128

#4 Search “decision support” 26,720

#3 Search “patient decision making” 503

#2 Search “patient participation” 20,987

#1 Search “shared decision making” 3821

The Cochrane Library – searched on 25 July 2016 (no date restrictions)“shared decision making”:ti,ab,kw (Word variations have been searched) OR “patient participation” or“patient decision making”:ti,ab,kw (Word variations have been searched) OR “decision support” or“decision aid”:ti,ab,kw (Word variations have been searched)

Used just these terms for Cochrane Database of Systematic Reviews, but added terms below for CochraneCentral Register of Controlled Trials (CENTRAL):

AND

old or older or frail* or dement* or alzheimer* or complex or aged or elderly or geriatric:ti (Wordvariations have been searched)



71

Google Scholar (July/August 2016)

l Search Google Scholar and Google (searches from 2000 onwards):

¢ Shared decision making AND review¢ Patient participation AND review¢ Patient decision making AND review¢ Decision support AND review¢ Decision AID AND review¢ Health communication AND review¢ Informed decision making AND review.

Keyword searches for papers by key authors, such as Elwyn and Légaré.

Keyword searches for SDM and MDTs.

RESPOND phase 2 searches

Searches were focused on the five ‘if–then’ statements developed in phase 1.

Reflecting patient and carer values

PubMed: person-centred care – searched on 15 December 2016

Search strategy((“shared decision making”) OR (“decision aid”) OR (“decision making”)) AND (((“goal setting”) OR (“personcentred care”) OR (“person centered care”) OR (“personalised”) OR (“patient goals”) OR (“patient values”)OR (“patient preferences”) OR (personalised[Title] OR personalized[Title] OR (patient centred) AND Title OR(patient centered) AND Title OR (patient preference*) AND Title OR goals[Title] OR (goal setting) AND Title OR

TABLE 15 PubMed minimally disruptive medicine: phase 1 search terms reducing treatment burden(searched August 2016; no date restrictions)

Search QueryNumber ofitems found

#16 Search (#14 AND #15) 75

#15 Search “systematic review” 78,622

#14 Search (#6 OR #7 OR #8 OR #9 OR #10 OR #11 OR #12 OR #13) 2967

#13 Search “expert patient”[Title/Abstract] 100

#12 Search (proxy[Title/Abstract] AND decision[Title/Abstract]) 572

#11 Search proxy NEAR decision 10

#10 Search “proxy decision making”[Title/Abstract] 44

#9 Search “proxy decision making” 44

#8 Search “collaborative care” 1554

#7 Search “coconstruction” 15

#6 Search “co production” 724

#3 Search (#1 OR #2) 15

#2 Search “minimally disruptive medicine”[Title/Abstract] 14

#1 Search “minimally disruptive medicine” 15

APPENDIX 1


72

personalised[Title])) AND (old*[Title] OR aged[Title] OR elder*[Title] OR geriatric[Title] OR frail[Title] OR complex[Title] OR complex[Title] OR carer[Title] OR dementia[Title] OR alzheimer*[Title]))

Google Scholar

l Shared decision making + patient valuesl House of Carel patient centred communication.

Preparing patients for the shared decision-making encounter

Coaching/advocacy – searched on 12 December 2016; no date restrictions

Search strategy(((“coaching”) OR (“advocacy”) OR (“advocate”) OR (advocate[Title/Abstract] OR advocacy[Title/Abstract]OR coach*[Title/Abstract]) OR (“coach”)) AND ((“shared decision making”) OR ((shared decision making)AND Title/Abstract OR SDM[Title/Abstract] OR decision[Title/Abstract]))) AND ((“frail elderly”) OR (“olderperson”) OR (“dementia”) OR (“elderly”) OR (old*[Title] OR elderly[Title] OR frail[Title] OR dementia[Title]OR alzheimer*[Title] OR aged[Title]))

PubMed: education/training – searched on 13 December 2016; no date restrictions

Search strategy

l Search 1 ((“shared decision making”) AND (education[Title] OR educate[Title] OR training[Title] ORguidance[Title] OR support[Title] OR information[Title] OR guide[Title] OR train[Title])) AND (old[Title] ORolder[Title] OR elder*[Title] OR frail[Title] OR complex[Title] OR carer[Title] OR geriatric[Title] OR aged[Title] OR dementia[Title] OR alzheimer[Title])

l Search 2 ((“shared decision making”) AND (education[Title] OR educate[Title] OR training[Title] ORguidance[Title] OR support[Title] OR information[Title] OR guide[Title] OR train[Title])) AND(“primary care”)

PubMed: shared decision-making for hard to engage groups (e.g. those with depression) –searched on 3 March 2017; date range 2012–17

Search strategy

l ‘Shared decision making’ OR ‘decision aid’ (both MeSH) OR (coproduction[Title/Abstract] OR co-productive[Title/Abstract] OR partnership[Title/Abstract] OR co-production[Title/Abstract] OR co-production[Title/Abstract]) AND ‘depression’ OR ‘mental health’ OR ‘mental illness’ (MeSH) AND systematic reviewFilters: published in the last 5 years

l ‘Shared decision making’ OR ‘decision aid’ (both MeSH) OR (coproduction[Title/Abstract] OR co-productive[Title/Abstract] OR partnership[Title/Abstract] OR co-production[Title/Abstract] OR co-production[Title/Abstract]) AND ‘depression’ OR ‘mental health’ OR ‘mental illness’ (MeSH) AND ((“frail elderly”) OR (“olderperson”) OR (“dementia”) OR (“elderly”) OR (old*[Title] OR elderly[Title] OR frail[Title] OR dementia[Title]OR alzheimer*[Title] OR aged[Title]))



73

Sharing the communication of a decision

PubMed: interprofessional – searched on 15 December 2016; date range 2006–16

Search strategy(((“interprofessionalism”) OR (“interprofessional”) OR (“interdisciplinary”) OR (“multidisciplinary”) OR(“coordinated”) OR (“cross discipline”) OR (“inter disciplinary”) OR (“integrated”)) AND ((“shared decisionmaking”) OR (“decision aid”) OR (“decision making”))) AND (old*[Title] OR aged[Title] OR elder*[Title]OR geriatric[Title] OR frail[Title] OR complex[Title] OR complex[Title] OR carer[Title] OR dementia[Title] ORalzheimer*[Title])

“relational coordination” OR “relational coproduction” AND (old*[Title] OR aged[Title] OR elder*[Title]OR geriatric[Title] OR frail[Title] OR complex[Title] OR complex[Title] OR carer[Title] OR dementia[Title] ORalzheimer*[Title]) (no date limits)

Relational competence: searched on 3 March 2017; no date restrictions

Search strategyRelational competence AND (promote[Title/Abstract] OR promotion[Title/Abstract] OR train*[Title/Abstract]OR increase[Title/Abstract] OR intervention[Title/Abstract] OR programme[Title/Abstract]) AND general ORcommunity OR primary

In addition, searches for papers by Légaré and colleagues who have written on the subject.

Google Scholar keyword searches

l Shared decision making + interprofessionall Shared decision making + integratedl Relational coordination + integratedl Relational coordination + olderl relational competence + shared decision making

Fake versus real shared decision-making

PubMed Search: incentives – searched on 13 December 2016; no date restrictions

Search strategyIncentive (ti/ab) OR incentives (ti/ab) OR incentivisation [TI/AB] OR incentivization [TI/AB]

AND “shared decision making” (MeSH)

Plus keyword searches in Google Scholar

l Shared decision making + incentivisationl Incentivizing shared decision making

APPENDIX 1


74

Reducing the workload (no date restrictions)

PubMed: searched on 13 December 2016

Search strategy(((“minimally disruptive medicine”) OR (“caregiver burden”) OR (“carer burden”) OR (“patient burden”)OR (“treatment burden”) OR (“quality of life”) OR (appropriate[Title] OR inappropriate[Title])) AND(“shared decision making”)) AND (old[Title/Abstract] OR older[Title/Abstract] OR aged[Title/Abstract] ORelderly[Title/Abstract] OR frail[Title/Abstract] OR carer[Title/Abstract] OR complex[Title/Abstract] OR geriatric[Title/Abstract] OR dementia[Title/Abstract] OR alzheimer[Title/Abstract])

Additional searches: in response to discussion with project team about areas wherethere appear to be gaps

PubMed: searched on 12 April 2017

Search strategy#1 “Shared decision making” and preference* [TI/AB] OR goal* [TI/AB]

#2 “primary care” OR “general practice” or “community care”

#1 AND #2 – restricted to last 5 years

PubMed: searched on 18 April 2017

Search strategy#1 shared decision making (MESH) and depression or depressed [TI/AB]

Scopus searches: searched on 19 April 2017

Search strategy((TITLE-ABS-KEY(shared decision making) OR (decision aid)) AND (TITLE-ABS-KEY (patient goal*) OR(patient value*) OR (patient preference*) OR personalised OR personalized)) AND (TITLE-ABS-KEY(old*)OR (aged) OR (elder*) OR (geriatric) OR (frail*) OR (dementia) OR (alzheimers))) AND (TITLE-ABS-KEY(randomised) Or (randomized) OR (intervention) OR (controlled) OR (trial) OR (program*) OR (qualitative)OR (evaluation))) AND (TITLE-ABS-KEY(primary care) OR (community care) OR (general practice) OR(integrat*) OR (coach*) OR (interprof*) OR (multidisciplinary))) AND NOT ((cancer) OR (breast) OR (end oflife) OR (palliative) OR (parent) OR (child*))



75

Appendix 2 Details of studies and reviews on theuse of patient decision aids



77

Author and date Study design Focus and participants Positive impact/facilitators No clear impact/negative impact/barriers

Austin et al. 2015103 Systematic review (17 RCTs,includes two on older people,four dementia)

Decision aids for people withadvanced and serious illness –most designed for use prior toconsultation

l Increase patient knowledge andpreparation for treatment choicesincluding ACP, palliative care and goals forcare communication and dementiafeeding options

Coylewright et al.2014108

Systematic review (7 RCTs) Decision aid – diverse populationsincluding diabetes mellitus, chestpain, osteoporosis or MI

l Knowledge transfer, decisional conflictand engagement with SDM are allimproved compared with usual care

Durand et al. 2015166 Review Incentives for SDM

All patient groups

l PDAs may improve patient knowledge buton their own do not influence the patient/HCP interaction

l Little evidence that tools given topatients ahead of clinical encounters leadto changes in communication patterns

l Provision of decision aids will notnecessarily lead to SDM

Durand et al. 201469 Systematic review (19 studies,10 pooled in MA)

SDM interventions for sociallydisadvantaged groups

l SDM interventions increased knowledge,informed choice, participation in decision-making, decision self-efficacy, preferencefor collaborative decision-making andreduced decisional conflict amongdisadvantaged patients

the potential for SDM interventions toreduce health inequalities and engagedisadvantaged patients will essentially berealised if tools and processes are tailoredto their needs

l No significant effect on adherence levels,anxiety and health outcomes

l In contexts in which SDM is not activelypromoted and supported by a trainedclinician and/or an intervention,disadvantaged patients are most likely tobe marginalised, thereby increasinghealth inequalities

Edwards et al. 2004,Elwyn et al. 2004167

Cluster RCT Training GPs in SDM, and theuse of simple risk communicationaids in general practice

l Authors conclude that patients can bemore involved in treatment decisions, andrisks/benefits of treatment options can beexplained in more detail, without adverselyaffecting patient-based outcomes

l No statistically significant effects of therisk communication or SDM interventionswere seen on the whole range ofpatient-based outcomes

APPEN

DIX

2

NIHRJournals


78


Fagerlin et al. 2013115 Evidence review and expertconsensus

The use of VCMs in patientdecision aids

l The effects of the VCMs were mixed:decision processes were improved in fiveof eight studies, but other outcomes werenot measured frequently enough to reachconclusions about whether the VCMs hadmainly positive or mainly neutral effects

l Say there is a need to better understandhow values clarification relates to SDM

Grim et al. 2016171 Qualitative (n= 22) To investigate decisional andinformation needs in peoplewith mental health issues

l Concrete aids for considering andcontributing to the preparation of thedecision-making occasion might reducepower differentials

Being offered the opportunity to preparefor the meeting is described as anindicator of mutuality, a factor that manyrespondents described as a prerequisite fora participatory decision-making process

Jones et al. 2011176 Questionnaires to assesspatient experiences in RCTof SDM

Web-based decision aid forcommunicating risk to peoplewith CVD

l 32% of participants liked being presentedwith a set of options

l 31% commented that the options wereeducational or common sense and/orreinforced their knowledge or currentbehaviour

l Poor provider uptake


Systematic review (44 studies,mainly qualitative and crosssectional)

Patient-reported barriers to andfacilitators of SDM

All patient groups

l Successful at supporting patients in theSDM process

l Does not address the essential first stepof ‘preparing for the SDM encounter’including perceiving the opportunity andpersonal ability to be involved

l Authors argue that there is a need to‘address the entry level factors to SDM’,such as subjective norms and patient’sroles, before secondary process factors,such as information provision andvalue clarification

DOI:10.3310/hsdr06280

HEA

LTHSERVICES

ANDDELIVERY

RESEARCH

2018VO

L.6NO.28

©Queen

’sPrinter

andController

ofHMSO

2018.This

work

was

producedby

Bunnet

al.under

theterm

sof

acom

missioning

contractissued

bythe

Secretaryof

Statefor

Health

andSocialC

are.This

issuemay

befreely

reproducedfor

thepurposes

ofprivate

researchand

studyand

extracts(or

indeed,the

fullreport)may

beincluded

inprofessional

journalsprovided

thatsuitable

acknowledgem

entismade

andthe

reproductionisnot

associatedwith

anyform

ofadvertising.

Applications

forcom

mercialreproduction

shouldbe

addressedto:

NIHRJournals


forHealth


Trialsand

StudiesCoordinating

Centre,

Alpha

House,

University

ofSoutham

ptonScience

Park,Southam

ptonSO

167N

S,UK.

79



Qualitive Embedding SDM in NHS – focusis on HCPs

l Short tools to use in the consultation arebetter (and cheaper and easier to keepupdated) than information sources for useoutside of the consultation

l In-consultation tools are often better atfacilitating discussion between patient andclinician than those used outsidethe consultation

. . . skills trump tools, and attitudestrump skills

l There will never be decision supporttools for every decision, nor will everypatient find them acceptable or helpful

l The skills to have different types ofconversations with patients areparamount, with or without anavailable tool

l Risk that clinicians may use brief decisionaids to enhance information transfer andtalk at patients, rather than improvinghow they work with patients

NationalCollaborating Centrefor Primary Care2009197

Guideline – based on reviewof evidence

How to involve adults and carersin decisions about prescribedmedicine – all age groups, typesof patients, any NHS setting

l Cite evidence from one review and fourRCTs that decision aids can reducedecisional conflict

Stacey et al. 2014 Systematic review Decision aids – all patientgroups, mainly one of decisions(e.g. screening)

l High-quality evidence that decision aidsimprove knowledge regarding options andreduce decisional conflict

l Moderate-quality evidence that decisionaids stimulate people to take a moreactive role in decision-making, andimprove accurate risk perceptions whenprobabilities are included in decision aids

l Low-quality evidence that decision aidsimprove congruence between chosenoption and the patient’s values

l Effects on adherence with the chosenoption, cost-effectiveness was not clear

l No impact on health outcomes

van Summeren et al.2016192

Mixed-methods pilot study(n= 60 older people and17 family practitioners)

Pilot study to test a conversationtool for medication review witholder people and familypractitioners

l Increase in satisfaction with medicationuse from 18% to 68% followingthe intervention

l Some participants found it difficult torank health outcomes as they were oftenperceived to be highly interrelated

van Weert et al.2016121

Systematic review [22 RCTs,many of the studies focus onsingle issues (e.g. AF, diabetesmellitus)]

Decision aids for older adults l Potential to increase older adults’ riskperception, improve knowledge, decreasedecisional conflict and improve patientparticipation in decision-making

l Potential mechanisms – feelings of beinginformed, clarity of values and decrease inpractitioner-controlled decision-making

l No difference in concordance withchosen treatment in mostincluded studies

ACP, advanced care planning; AT, atrial fibrillation; CVD, cardiovascular disease; MA, meta-analysis; MI, myocardial infarction; VCM, values clarification method.

APPEN

DIX

2

NIHRJournals


80

Appendix 3 Schedules for stakeholder interviewsphase 1

P rogramme intervention: How do we support shared decision-making for older people with multiplehealth and social care needs?

Preamble

We want to find out how we can improve the ways in which we involve older people, and their familycarers, in decisions about their health and social care. We call this approach SDM. In particular, we want tofind out how SDM can work in community settings where many different health and social care workers(such as GPs, nurses, social carers) may be involved in caring for the older person.

For this review we plan to use a research approach called realist synthesis. In realist synthesis the views ofstakeholders (e.g. patients, carers, practitioners and policy makers) are very important in helping to guidethe review process. There are three phases to the review.

In the current phase of the synthesis we are looking to find out what approaches are used to involve olderpeople, and their family carers, in SDM and how these different approaches are thought to work.

Trigger questions

1. Are you familiar with the term SDM? What is your understanding of it?2. What are the current problems and challenges facing older people with multiple health and social care

needs and their families when they are trying to make decisions about their health and social care?

i. How should these issues be picked up within programmes to promote SDM or sharedcare planning?

3. Do you think current processes for making decisions about health care take into account patients’values and preferences?

i. If yes, how? What are the facilitators?ii. If no, why not? What are the barriers?

4. For older people with multiple conditions there can be many HSCPs involved in their care; how candecisions be negotiated between, and communicated to, these different groups?

5. What skills/training do you think HSCPs require in order to able to share decision-making with olderpeople and their families?

i. In your experience, do they have these skills?ii. If not, what changes are needed?

6. For you, what would be the components of an ‘ideal’ intervention or programme for promoting shareddecision-making for older people with multiple health and social care needs?



81

Appendix 4 Interview schedule for phase 3

Service provider’s interview schedule

Context–mechanism–outcome 1: reflecting patient and carer valuesQuestion: the evidence suggests that for SDM to happen it is very important that systems enable healthand care professionals to develop relationships with patients and carers that allow them to understandpatients’ and carers’ individual emotional, cultural and cognitive needs (e.g. person-centred approaches tocare). Our hypothesis is that this will help patients and carers to feel valued, listened to and involved inthe decision.

Do you have any examples where this has been done well?

If yes – why do you think it worked well? What needed to be in place? What were the outcomes?

Could follow up with prompts around:

l continuity of carel effective communication skills (what would these look like)l less focus on biomedical targets.

Context–mechanism–outcome 2: systems to support shareddecision-making

Question: the evidence suggests that systems need to be organised to support and prioritise SDM,for example via support from clinical leaders or commissioners.

Do you have any examples where this has been done well?

If yes – why do you think it worked well? What needed to be in place? What were the outcomes?

Could then go on to ask similar questions around:

l systems and toolsl longer appointmentsl training for health and care practitionersl systems to prepare patients for the consultation (e.g. getting results in advance).

Context–mechanism–outcome 3: preparing (patients, carers andhealth-care professionals) for the shared decision-making encounter

Question: one of the hypotheses is that some people will need more support that others to engage withSDM. This might be because of conditions such as depression, lower health literacy or cognitive problems.

Do you have any examples/thoughts of how people can be encouraged to participate in SDM?

If they give an example – why did it work? What needed to be in place?



83

This can be followed up with prompts around:

l the use of advocates or coachesl decision aids that take account of multimorbidityl a culture of ‘no question is a silly question’.

Context–mechanism–outcome 4: shared decision-making as part of awider culture change (the other context–mechanism–outcomes all leadto this one)

Question: our hypothesis is that SDM only becomes embedded if it is part of a wider culture changethat involves practitioners letting go of the power in decision-making, and patients and carers taking(or sharing) responsibility for their health and the decisions which affect them.

We would be very interested in your thoughts on this.

Do you have experience or examples of where this has happened? How was it done? What needed to bein place?

APPENDIX 4


84

Part of the NIHR Journals Library www.journalslibrary.nihr.ac.uk

Published by the NIHR Journals Library

This report presents independent research funded by the National Institute for Health Research (NIHR). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health

EMEHS&DRHTAPGfARPHR